Neurodevelopmental Disorders

Updated clinical guidelines for the early diagnosis and management of cerebral palsy have been issued by the American Academy of Pediatrics.

Coauthored with the American Academy for Cerebral Palsy and Developmental Medicine, the report builds on new evidence for improved care and outcomes since the 2006 consensus guidelines.

Cerebral palsy, the most common neuromotor disorder of childhood, is often accompanied by cognitive impairments, epilepsy, sensory impairments, behavioral problems, communication difficulties, breathing and sleep problems, gastrointestinal and nutritional problems, and bone and orthopedic problems.

In the United States, the estimated prevalence of cerebral palsy ranges from 1.5 to 4 per 1,000 live births.

“Early identification and initiation of evidence-based motor therapies can improve outcomes by taking advantage of the neuroplasticity in the infant brain,” said the guideline authors in an executive summary.

The guideline, published in Pediatrics, is directed to primary care physicians with pediatrics, family practice, or internal medicine training. “It’s a much more comprehensive overview of the important role that primary care providers play in the lifetime care of people with cerebral palsy,” explained Garey Noritz, MD, chair of the 2021-2022 Executive Committee of the Council on Children with Disabilities. Dr. Noritz, a professor of pediatrics at Ohio State University and division chief of the complex health care program at Nationwide Children’s Hospital, both in Columbus, said: “The combined efforts of the primary care physician and specialty providers are needed to achieve the best outcomes.”

The AAP recommends that primary care pediatricians, neonatologists, and other specialists caring for hospitalized newborns recognize those at high risk of cerebral palsy, diagnose them as early as possible, and promptly refer them for therapy. Primary care physicians are advised to identify motor delays early by formalizing standardized developmental surveillance and screening at 9, 18, and 30 months, and to implement family-centered care across multiple specialists.

“If a motor disorder is suspected, primary care physicians should simultaneously begin a medical evaluation, refer to a specialist for definitive diagnosis, and to therapists for treatment,” Dr. Noritz emphasized.

“The earlier any possible movement disorder is recognized and intervention begins, the better a child can develop a gait pattern and work toward living an independent life, said Manish N. Shah, MD, associate professor of pediatric neurosurgery at the University of Texas, Houston, who was not involved in developing the guidelines.

For children in whom physical therapy and medication have not reduced leg spasticity, a minimally invasive spinal procedure can help release contracted tendons and encourage independent walking. The optimal age for selective dorsal rhizotomy is about 4 years, said Dr. Shah, who is director of the Texas Comprehensive Spasticity Center at Children’s Memorial Hermann Hospital in Houston. “You can turn these children into walkers. As adults, they can get jobs, have their own families. It’s life-changing.”

Importantly, the guidelines address the health care disparities leading to a higher prevalence of cerebral palsy in Black children and in those from families with lower socioeconomic status. “Efforts to combat racism and eliminate barriers to culturally sensitive prenatal, perinatal, and later pediatric care may help to improve outcomes for all children with cerebral palsy,” the authors said.

“Every child with cerebral palsy needs an individual plan, but only 30% or 40% are getting interventions,” said Dr. Shah. The updated guidelines could help payers rethink the 15-20 visits a year that are often approved, compared with the 2-3 visits per week that are needed for speech, physical, and occupational therapy, he pointed out.

“Financial issues often compromise the interdisciplinary and coordinated care associated with favorable outcomes in children with cerebral palsy,” said Heidi Feldman, MD, PhD, a developmental and behavioral pediatric specialist at Stanford (Calif.) Medicine Children’s Health’s Johnson Center for Pregnancy and Newborn Services. “With a new guideline, there may be greater willingness to fund these essential services.”

In the meantime, the AAP recommends that pediatricians advise families about available medical, social, and educational services, such as early intervention services, the Title V Maternal and Child Health block grant program, and special education services through the public school system.

Children with cerebral palsy need the same standardized primary care as any child, including the full schedule of recommended vaccinations and vision and hearing testing. They also need to be monitored and treated for the many problems that commonly co-occur, including chronic pain.

When secondary complications arise, the frequency of visits should increase.

Pneumonia, the leading cause of death in children and adolescents with cerebral palsy, can be prevented or minimized through immunization against respiratory diseases and screening for signs and symptoms of aspiration and sleep-disordered breathing.

The AAP also recommends that symptoms or functional declines undergo full investigation into other potential causes.

Since the sedentary lifestyle associated with cerebral palsy is now known to be related to the higher rates of cardiovascular complications in this patient population, the AAP recommends more attention be paid to physical activity and a healthy diet early in life. Pediatricians are advised to help families locate suitable opportunities for adaptive sports and recreation.

Almost 50% of children and adolescents with cerebral palsy have intellectual disability, 60%-80% have difficulty speaking, and about 25% are nonverbal. To address this, pediatricians should maximize the use of augmentative and alternative communication devices and involve experts in speech and language pathology, according to the guidelines.

“Many individuals with cerebral palsy and severe motor limitations have active, creative minds, and may need assistive technology, such as electronic talking devices, to demonstrate that mental life,” said Dr. Feldman. “Primary care clinicians should advocate for assistive technology.”

For challenging behavior, especially in the patient with limited verbal skills, potential nonbehavioral culprits such as constipation, esophageal reflux disease, and musculoskeletal or dental pain must be ruled out.

In the lead-up to adolescence, youth with cerebral palsy must be prepared for puberty, menstruation, and healthy, safe sexual relationships, much like their nonaffected peers. Since a disproportionate number of children with cerebral palsy experience neglect and physical, sexual, and emotional abuse, however, family stressors should be identified and caregivers referred for support services.

For the transition from pediatric to adult health care, the AAP recommends that structured planning begin between 12 and 14 years of age. Before transfer, the pediatrician should prepare a comprehensive medical summary with the input of the patient, parent/guardian, and pediatric subspecialists.

Without a proper handoff, “there is an increased risk of morbidity, medical complications, unnecessary emergency department visits, hospitalizations, and procedures,” the authors warned.

Transitions are likely to run more smoothly when youth are given the opportunity to understand their medical condition and be involved in decisions about their health. With this in mind, the AAP recommends that pediatricians actively discourage overprotective parents from getting in the way of their child developing “maximal independence.”

No potential conflicts of interest were disclosed by the authors, Dr. Shah, or Dr. Feldman.

*This story was updated on Nov. 28, 2022.
 

Updated clinical guidelines for the early diagnosis and management of cerebral palsy have been issued by the American Academy of Pediatrics.

Coauthored with the American Academy for Cerebral Palsy and Developmental Medicine, the report builds on new evidence for improved care and outcomes since the 2006 consensus guidelines.

Cerebral palsy, the most common neuromotor disorder of childhood, is often accompanied by cognitive impairments, epilepsy, sensory impairments, behavioral problems, communication difficulties, breathing and sleep problems, gastrointestinal and nutritional problems, and bone and orthopedic problems.

In the United States, the estimated prevalence of cerebral palsy ranges from 1.5 to 4 per 1,000 live births.

“Early identification and initiation of evidence-based motor therapies can improve outcomes by taking advantage of the neuroplasticity in the infant brain,” said the guideline authors in an executive summary.

The guideline, published in Pediatrics, is directed to primary care physicians with pediatrics, family practice, or internal medicine training. “It’s a much more comprehensive overview of the important role that primary care providers play in the lifetime care of people with cerebral palsy,” explained Garey Noritz, MD, chair of the 2021-2022 Executive Committee of the Council on Children with Disabilities. Dr. Noritz, a professor of pediatrics at Ohio State University and division chief of the complex health care program at Nationwide Children’s Hospital, both in Columbus, said: “The combined efforts of the primary care physician and specialty providers are needed to achieve the best outcomes.”

The AAP recommends that primary care pediatricians, neonatologists, and other specialists caring for hospitalized newborns recognize those at high risk of cerebral palsy, diagnose them as early as possible, and promptly refer them for therapy. Primary care physicians are advised to identify motor delays early by formalizing standardized developmental surveillance and screening at 9, 18, and 30 months, and to implement family-centered care across multiple specialists.

“If a motor disorder is suspected, primary care physicians should simultaneously begin a medical evaluation, refer to a specialist for definitive diagnosis, and to therapists for treatment,” Dr. Noritz emphasized.

“The earlier any possible movement disorder is recognized and intervention begins, the better a child can develop a gait pattern and work toward living an independent life, said Manish N. Shah, MD, associate professor of pediatric neurosurgery at the University of Texas, Houston, who was not involved in developing the guidelines.

For children in whom physical therapy and medication have not reduced leg spasticity, a minimally invasive spinal procedure can help release contracted tendons and encourage independent walking. The optimal age for selective dorsal rhizotomy is about 4 years, said Dr. Shah, who is director of the Texas Comprehensive Spasticity Center at Children’s Memorial Hermann Hospital in Houston. “You can turn these children into walkers. As adults, they can get jobs, have their own families. It’s life-changing.”

Importantly, the guidelines address the health care disparities leading to a higher prevalence of cerebral palsy in Black children and in those from families with lower socioeconomic status. “Efforts to combat racism and eliminate barriers to culturally sensitive prenatal, perinatal, and later pediatric care may help to improve outcomes for all children with cerebral palsy,” the authors said.

“Every child with cerebral palsy needs an individual plan, but only 30% or 40% are getting interventions,” said Dr. Shah. The updated guidelines could help payers rethink the 15-20 visits a year that are often approved, compared with the 2-3 visits per week that are needed for speech, physical, and occupational therapy, he pointed out.

“Financial issues often compromise the interdisciplinary and coordinated care associated with favorable outcomes in children with cerebral palsy,” said Heidi Feldman, MD, PhD, a developmental and behavioral pediatric specialist at Stanford (Calif.) Medicine Children’s Health’s Johnson Center for Pregnancy and Newborn Services. “With a new guideline, there may be greater willingness to fund these essential services.”

In the meantime, the AAP recommends that pediatricians advise families about available medical, social, and educational services, such as early intervention services, the Title V Maternal and Child Health block grant program, and special education services through the public school system.

Children with cerebral palsy need the same standardized primary care as any child, including the full schedule of recommended vaccinations and vision and hearing testing. They also need to be monitored and treated for the many problems that commonly co-occur, including chronic pain.

When secondary complications arise, the frequency of visits should increase.

Pneumonia, the leading cause of death in children and adolescents with cerebral palsy, can be prevented or minimized through immunization against respiratory diseases and screening for signs and symptoms of aspiration and sleep-disordered breathing.

The AAP also recommends that symptoms or functional declines undergo full investigation into other potential causes.

Since the sedentary lifestyle associated with cerebral palsy is now known to be related to the higher rates of cardiovascular complications in this patient population, the AAP recommends more attention be paid to physical activity and a healthy diet early in life. Pediatricians are advised to help families locate suitable opportunities for adaptive sports and recreation.

Almost 50% of children and adolescents with cerebral palsy have intellectual disability, 60%-80% have difficulty speaking, and about 25% are nonverbal. To address this, pediatricians should maximize the use of augmentative and alternative communication devices and involve experts in speech and language pathology, according to the guidelines.

“Many individuals with cerebral palsy and severe motor limitations have active, creative minds, and may need assistive technology, such as electronic talking devices, to demonstrate that mental life,” said Dr. Feldman. “Primary care clinicians should advocate for assistive technology.”

For challenging behavior, especially in the patient with limited verbal skills, potential nonbehavioral culprits such as constipation, esophageal reflux disease, and musculoskeletal or dental pain must be ruled out.

In the lead-up to adolescence, youth with cerebral palsy must be prepared for puberty, menstruation, and healthy, safe sexual relationships, much like their nonaffected peers. Since a disproportionate number of children with cerebral palsy experience neglect and physical, sexual, and emotional abuse, however, family stressors should be identified and caregivers referred for support services.

For the transition from pediatric to adult health care, the AAP recommends that structured planning begin between 12 and 14 years of age. Before transfer, the pediatrician should prepare a comprehensive medical summary with the input of the patient, parent/guardian, and pediatric subspecialists.

Without a proper handoff, “there is an increased risk of morbidity, medical complications, unnecessary emergency department visits, hospitalizations, and procedures,” the authors warned.

Transitions are likely to run more smoothly when youth are given the opportunity to understand their medical condition and be involved in decisions about their health. With this in mind, the AAP recommends that pediatricians actively discourage overprotective parents from getting in the way of their child developing “maximal independence.”

No potential conflicts of interest were disclosed by the authors, Dr. Shah, or Dr. Feldman.

*This story was updated on Nov. 28, 2022.
 

Updated clinical guidelines for the early diagnosis and management of cerebral palsy have been issued by the American Academy of Pediatrics.

Coauthored with the American Academy for Cerebral Palsy and Developmental Medicine, the report builds on new evidence for improved care and outcomes since the 2006 consensus guidelines.

Cerebral palsy, the most common neuromotor disorder of childhood, is often accompanied by cognitive impairments, epilepsy, sensory impairments, behavioral problems, communication difficulties, breathing and sleep problems, gastrointestinal and nutritional problems, and bone and orthopedic problems.

In the United States, the estimated prevalence of cerebral palsy ranges from 1.5 to 4 per 1,000 live births.

“Early identification and initiation of evidence-based motor therapies can improve outcomes by taking advantage of the neuroplasticity in the infant brain,” said the guideline authors in an executive summary.

The guideline, published in Pediatrics, is directed to primary care physicians with pediatrics, family practice, or internal medicine training. “It’s a much more comprehensive overview of the important role that primary care providers play in the lifetime care of people with cerebral palsy,” explained Garey Noritz, MD, chair of the 2021-2022 Executive Committee of the Council on Children with Disabilities. Dr. Noritz, a professor of pediatrics at Ohio State University and division chief of the complex health care program at Nationwide Children’s Hospital, both in Columbus, said: “The combined efforts of the primary care physician and specialty providers are needed to achieve the best outcomes.”

The AAP recommends that primary care pediatricians, neonatologists, and other specialists caring for hospitalized newborns recognize those at high risk of cerebral palsy, diagnose them as early as possible, and promptly refer them for therapy. Primary care physicians are advised to identify motor delays early by formalizing standardized developmental surveillance and screening at 9, 18, and 30 months, and to implement family-centered care across multiple specialists.

“If a motor disorder is suspected, primary care physicians should simultaneously begin a medical evaluation, refer to a specialist for definitive diagnosis, and to therapists for treatment,” Dr. Noritz emphasized.

“The earlier any possible movement disorder is recognized and intervention begins, the better a child can develop a gait pattern and work toward living an independent life, said Manish N. Shah, MD, associate professor of pediatric neurosurgery at the University of Texas, Houston, who was not involved in developing the guidelines.

For children in whom physical therapy and medication have not reduced leg spasticity, a minimally invasive spinal procedure can help release contracted tendons and encourage independent walking. The optimal age for selective dorsal rhizotomy is about 4 years, said Dr. Shah, who is director of the Texas Comprehensive Spasticity Center at Children’s Memorial Hermann Hospital in Houston. “You can turn these children into walkers. As adults, they can get jobs, have their own families. It’s life-changing.”

Importantly, the guidelines address the health care disparities leading to a higher prevalence of cerebral palsy in Black children and in those from families with lower socioeconomic status. “Efforts to combat racism and eliminate barriers to culturally sensitive prenatal, perinatal, and later pediatric care may help to improve outcomes for all children with cerebral palsy,” the authors said.

“Every child with cerebral palsy needs an individual plan, but only 30% or 40% are getting interventions,” said Dr. Shah. The updated guidelines could help payers rethink the 15-20 visits a year that are often approved, compared with the 2-3 visits per week that are needed for speech, physical, and occupational therapy, he pointed out.

“Financial issues often compromise the interdisciplinary and coordinated care associated with favorable outcomes in children with cerebral palsy,” said Heidi Feldman, MD, PhD, a developmental and behavioral pediatric specialist at Stanford (Calif.) Medicine Children’s Health’s Johnson Center for Pregnancy and Newborn Services. “With a new guideline, there may be greater willingness to fund these essential services.”

In the meantime, the AAP recommends that pediatricians advise families about available medical, social, and educational services, such as early intervention services, the Title V Maternal and Child Health block grant program, and special education services through the public school system.

Children with cerebral palsy need the same standardized primary care as any child, including the full schedule of recommended vaccinations and vision and hearing testing. They also need to be monitored and treated for the many problems that commonly co-occur, including chronic pain.

When secondary complications arise, the frequency of visits should increase.

Pneumonia, the leading cause of death in children and adolescents with cerebral palsy, can be prevented or minimized through immunization against respiratory diseases and screening for signs and symptoms of aspiration and sleep-disordered breathing.

The AAP also recommends that symptoms or functional declines undergo full investigation into other potential causes.

Since the sedentary lifestyle associated with cerebral palsy is now known to be related to the higher rates of cardiovascular complications in this patient population, the AAP recommends more attention be paid to physical activity and a healthy diet early in life. Pediatricians are advised to help families locate suitable opportunities for adaptive sports and recreation.

Almost 50% of children and adolescents with cerebral palsy have intellectual disability, 60%-80% have difficulty speaking, and about 25% are nonverbal. To address this, pediatricians should maximize the use of augmentative and alternative communication devices and involve experts in speech and language pathology, according to the guidelines.

“Many individuals with cerebral palsy and severe motor limitations have active, creative minds, and may need assistive technology, such as electronic talking devices, to demonstrate that mental life,” said Dr. Feldman. “Primary care clinicians should advocate for assistive technology.”

For challenging behavior, especially in the patient with limited verbal skills, potential nonbehavioral culprits such as constipation, esophageal reflux disease, and musculoskeletal or dental pain must be ruled out.

In the lead-up to adolescence, youth with cerebral palsy must be prepared for puberty, menstruation, and healthy, safe sexual relationships, much like their nonaffected peers. Since a disproportionate number of children with cerebral palsy experience neglect and physical, sexual, and emotional abuse, however, family stressors should be identified and caregivers referred for support services.

For the transition from pediatric to adult health care, the AAP recommends that structured planning begin between 12 and 14 years of age. Before transfer, the pediatrician should prepare a comprehensive medical summary with the input of the patient, parent/guardian, and pediatric subspecialists.

Without a proper handoff, “there is an increased risk of morbidity, medical complications, unnecessary emergency department visits, hospitalizations, and procedures,” the authors warned.

Transitions are likely to run more smoothly when youth are given the opportunity to understand their medical condition and be involved in decisions about their health. With this in mind, the AAP recommends that pediatricians actively discourage overprotective parents from getting in the way of their child developing “maximal independence.”

No potential conflicts of interest were disclosed by the authors, Dr. Shah, or Dr. Feldman.

*This story was updated on Nov. 28, 2022.
 

Brain indicators of motor impairment were distinct among children with autism spectrum disorder (ASD), those with developmental coordination disorder (DCD), and controls, in a new study.

Previous research suggests that individuals with ASD overlap in motor impairment with those with DCD. But these two conditions may differ significantly in some areas, as children with ASD tend to show weaker skills in social motor tasks such as imitation, wrote Emil Kilroy, PhD, of the University of Southern California, Los Angeles, and colleagues.

The neurobiological basis of autism remains unknown, despite many research efforts, in part because of the heterogeneity of the disease, said corresponding author Lisa Aziz-Zadeh, PhD, also of the University of Southern California, in an interview.

Comorbidity with other disorders is a strong contributing factor to heterogeneity, and approximately 80% of autistic individuals have motor impairments and meet criteria for a diagnosis of DCD, said Dr. Aziz-Zadeh. “Controlling for other comorbidities, such as developmental coordination disorder, when trying to understand the neural basis of autism is important, so that we can understand which neural circuits are related to [core symptoms of autism] and which ones are related to motor impairments that are comorbid with autism, but not necessarily part of the core symptomology,” she explained. “We focused on white matter pathways here because many researchers now think the underlying basis of autism, besides genetics, is brain connectivity differences.”

In their study published in Scientific Reports, the researchers reviewed data from whole-brain correlational tractography for 22 individuals with autism spectrum disorder, 16 with developmental coordination disorder, and 21 normally developing individuals, who served as the control group. The mean age of the participants was approximately 11 years; the age range was 8-17 years.

Overall, patterns of brain diffusion (movement of fluid, mainly water molecules, in the brain) were significantly different in ASD children, compared with typically developing children.

The ASD group showed significantly reduced diffusivity in the bilateral fronto-parietal cingulum and the left parolfactory cingulum. This finding reflects previous studies suggesting an association between brain patterns in the cingulum area and ASD. But the current study is “the first to identify the fronto-parietal and the parolfactory portions of the cingulum as well as the anterior caudal u-fibers as specific to core ASD symptomatology and not related to motor-related comorbidity,” the researchers wrote.

Differences in brain diffusivity were associated with worse performance on motor skills and behavioral measures for children with ASD and children with DCD, compared with controls.

Motor development was assessed using the Total Movement Assessment Battery for Children-2 (MABC-2) and the Florida Apraxia Battery modified for children (FAB-M). The MABC-2 is among the most common tools for measuring motor skills and identifying clinically relevant motor deficits in children and teens aged 3-16 years. The test includes three subtest scores (manual dexterity, gross-motor aiming and catching, and balance) and a total score. Scores are based on a child’s best performance on each component, and higher scores indicate better functioning. In the new study, The MABC-2 total scores averaged 10.57 for controls, compared with 5.76 in the ASD group, and 4.31 in the DCD group.

Children with ASD differed from the other groups in social measures. Social skills were measured using several tools, including the Social Responsivity Scale (SRS Total), which is a parent-completed survey that includes a total score designed to reflect the severity of social deficits in ASD. It is divided into five subscales for parents to assess a child’s social skill impairment: social awareness, social cognition, social communication, social motivation, and mannerisms. Scores for the SRS are calculated in T-scores, in which a score of 50 represents the mean. T-scores of 59 and below are generally not associated with ASD, and patients with these scores are considered to have low to no symptomatology. Scores on the SRS Total in the new study were 45.95, 77.45, and 55.81 for the controls, ASD group, and DCD group, respectively.
 

Results should raise awareness

“The results were largely predicted in our hypotheses – that we would find specific white matter pathways in autism that would differ from [what we saw in typically developing patients and those with DCD], and that diffusivity in ASD would be related to socioemotional differences,” Dr. Aziz-Zadeh said, in an interview.

“What was surprising was that some pathways that had previously been thought to be different in autism were also compromised in DCD, indicating that they were common to motor deficits which both groups shared, not to core autism symptomology,” she noted.

A message for clinicians from the study is that a dual diagnosis of DCD is often missing in ASD practice, said Dr. Aziz-Zadeh. “Given that approximately 80% of children with ASD have DCD, testing for DCD and addressing potential motor issues should be more common practice,” she said.

Dr. Aziz-Zadeh and colleagues are now investigating relationships between the brain, behavior, and the gut microbiome. “We think that understanding autism from a full-body perspective, examining interactions between the brain and the body, will be an important step in this field,” she emphasized.

The study was limited by several factors, including the small sample size, the use of only right-handed participants, and the use of self-reports by children and parents, the researchers noted. Additionally, they noted that white matter develops at different rates in different age groups, and future studies might consider age as a factor, as well as further behavioral assessments, they said.
 

Small sample size limits conclusions

“Understanding the neuroanatomic differences that may contribute to the core symptoms of ASD is a very important goal for the field, particularly how they relate to other comorbid symptoms and neurodevelopmental disorders,” said Michael Gandal, MD, of the department of psychiatry at the University of Pennsylvania, Philadelphia, and a member of the Lifespan Brain Institute at the Children’s Hospital of Philadelphia, in an interview.

“While this study provides some clues into how structural connectivity may relate to motor coordination in ASD, it will be important to replicate these findings in a much larger sample before we can really appreciate how robust these findings are and how well they generalize to the broader ASD population,” Dr. Gandal emphasized.

The study was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development. The researchers had no financial conflicts to disclose. Dr. Gandal had no financial conflicts to disclose.

Brain indicators of motor impairment were distinct among children with autism spectrum disorder (ASD), those with developmental coordination disorder (DCD), and controls, in a new study.

Previous research suggests that individuals with ASD overlap in motor impairment with those with DCD. But these two conditions may differ significantly in some areas, as children with ASD tend to show weaker skills in social motor tasks such as imitation, wrote Emil Kilroy, PhD, of the University of Southern California, Los Angeles, and colleagues.

The neurobiological basis of autism remains unknown, despite many research efforts, in part because of the heterogeneity of the disease, said corresponding author Lisa Aziz-Zadeh, PhD, also of the University of Southern California, in an interview.

Comorbidity with other disorders is a strong contributing factor to heterogeneity, and approximately 80% of autistic individuals have motor impairments and meet criteria for a diagnosis of DCD, said Dr. Aziz-Zadeh. “Controlling for other comorbidities, such as developmental coordination disorder, when trying to understand the neural basis of autism is important, so that we can understand which neural circuits are related to [core symptoms of autism] and which ones are related to motor impairments that are comorbid with autism, but not necessarily part of the core symptomology,” she explained. “We focused on white matter pathways here because many researchers now think the underlying basis of autism, besides genetics, is brain connectivity differences.”

In their study published in Scientific Reports, the researchers reviewed data from whole-brain correlational tractography for 22 individuals with autism spectrum disorder, 16 with developmental coordination disorder, and 21 normally developing individuals, who served as the control group. The mean age of the participants was approximately 11 years; the age range was 8-17 years.

Overall, patterns of brain diffusion (movement of fluid, mainly water molecules, in the brain) were significantly different in ASD children, compared with typically developing children.

The ASD group showed significantly reduced diffusivity in the bilateral fronto-parietal cingulum and the left parolfactory cingulum. This finding reflects previous studies suggesting an association between brain patterns in the cingulum area and ASD. But the current study is “the first to identify the fronto-parietal and the parolfactory portions of the cingulum as well as the anterior caudal u-fibers as specific to core ASD symptomatology and not related to motor-related comorbidity,” the researchers wrote.

Differences in brain diffusivity were associated with worse performance on motor skills and behavioral measures for children with ASD and children with DCD, compared with controls.

Motor development was assessed using the Total Movement Assessment Battery for Children-2 (MABC-2) and the Florida Apraxia Battery modified for children (FAB-M). The MABC-2 is among the most common tools for measuring motor skills and identifying clinically relevant motor deficits in children and teens aged 3-16 years. The test includes three subtest scores (manual dexterity, gross-motor aiming and catching, and balance) and a total score. Scores are based on a child’s best performance on each component, and higher scores indicate better functioning. In the new study, The MABC-2 total scores averaged 10.57 for controls, compared with 5.76 in the ASD group, and 4.31 in the DCD group.

Children with ASD differed from the other groups in social measures. Social skills were measured using several tools, including the Social Responsivity Scale (SRS Total), which is a parent-completed survey that includes a total score designed to reflect the severity of social deficits in ASD. It is divided into five subscales for parents to assess a child’s social skill impairment: social awareness, social cognition, social communication, social motivation, and mannerisms. Scores for the SRS are calculated in T-scores, in which a score of 50 represents the mean. T-scores of 59 and below are generally not associated with ASD, and patients with these scores are considered to have low to no symptomatology. Scores on the SRS Total in the new study were 45.95, 77.45, and 55.81 for the controls, ASD group, and DCD group, respectively.
 

Results should raise awareness

“The results were largely predicted in our hypotheses – that we would find specific white matter pathways in autism that would differ from [what we saw in typically developing patients and those with DCD], and that diffusivity in ASD would be related to socioemotional differences,” Dr. Aziz-Zadeh said, in an interview.

“What was surprising was that some pathways that had previously been thought to be different in autism were also compromised in DCD, indicating that they were common to motor deficits which both groups shared, not to core autism symptomology,” she noted.

A message for clinicians from the study is that a dual diagnosis of DCD is often missing in ASD practice, said Dr. Aziz-Zadeh. “Given that approximately 80% of children with ASD have DCD, testing for DCD and addressing potential motor issues should be more common practice,” she said.

Dr. Aziz-Zadeh and colleagues are now investigating relationships between the brain, behavior, and the gut microbiome. “We think that understanding autism from a full-body perspective, examining interactions between the brain and the body, will be an important step in this field,” she emphasized.

The study was limited by several factors, including the small sample size, the use of only right-handed participants, and the use of self-reports by children and parents, the researchers noted. Additionally, they noted that white matter develops at different rates in different age groups, and future studies might consider age as a factor, as well as further behavioral assessments, they said.
 

Small sample size limits conclusions

“Understanding the neuroanatomic differences that may contribute to the core symptoms of ASD is a very important goal for the field, particularly how they relate to other comorbid symptoms and neurodevelopmental disorders,” said Michael Gandal, MD, of the department of psychiatry at the University of Pennsylvania, Philadelphia, and a member of the Lifespan Brain Institute at the Children’s Hospital of Philadelphia, in an interview.

“While this study provides some clues into how structural connectivity may relate to motor coordination in ASD, it will be important to replicate these findings in a much larger sample before we can really appreciate how robust these findings are and how well they generalize to the broader ASD population,” Dr. Gandal emphasized.

The study was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development. The researchers had no financial conflicts to disclose. Dr. Gandal had no financial conflicts to disclose.

Brain indicators of motor impairment were distinct among children with autism spectrum disorder (ASD), those with developmental coordination disorder (DCD), and controls, in a new study.

Previous research suggests that individuals with ASD overlap in motor impairment with those with DCD. But these two conditions may differ significantly in some areas, as children with ASD tend to show weaker skills in social motor tasks such as imitation, wrote Emil Kilroy, PhD, of the University of Southern California, Los Angeles, and colleagues.

The neurobiological basis of autism remains unknown, despite many research efforts, in part because of the heterogeneity of the disease, said corresponding author Lisa Aziz-Zadeh, PhD, also of the University of Southern California, in an interview.

Comorbidity with other disorders is a strong contributing factor to heterogeneity, and approximately 80% of autistic individuals have motor impairments and meet criteria for a diagnosis of DCD, said Dr. Aziz-Zadeh. “Controlling for other comorbidities, such as developmental coordination disorder, when trying to understand the neural basis of autism is important, so that we can understand which neural circuits are related to [core symptoms of autism] and which ones are related to motor impairments that are comorbid with autism, but not necessarily part of the core symptomology,” she explained. “We focused on white matter pathways here because many researchers now think the underlying basis of autism, besides genetics, is brain connectivity differences.”

In their study published in Scientific Reports, the researchers reviewed data from whole-brain correlational tractography for 22 individuals with autism spectrum disorder, 16 with developmental coordination disorder, and 21 normally developing individuals, who served as the control group. The mean age of the participants was approximately 11 years; the age range was 8-17 years.

Overall, patterns of brain diffusion (movement of fluid, mainly water molecules, in the brain) were significantly different in ASD children, compared with typically developing children.

The ASD group showed significantly reduced diffusivity in the bilateral fronto-parietal cingulum and the left parolfactory cingulum. This finding reflects previous studies suggesting an association between brain patterns in the cingulum area and ASD. But the current study is “the first to identify the fronto-parietal and the parolfactory portions of the cingulum as well as the anterior caudal u-fibers as specific to core ASD symptomatology and not related to motor-related comorbidity,” the researchers wrote.

Differences in brain diffusivity were associated with worse performance on motor skills and behavioral measures for children with ASD and children with DCD, compared with controls.

Motor development was assessed using the Total Movement Assessment Battery for Children-2 (MABC-2) and the Florida Apraxia Battery modified for children (FAB-M). The MABC-2 is among the most common tools for measuring motor skills and identifying clinically relevant motor deficits in children and teens aged 3-16 years. The test includes three subtest scores (manual dexterity, gross-motor aiming and catching, and balance) and a total score. Scores are based on a child’s best performance on each component, and higher scores indicate better functioning. In the new study, The MABC-2 total scores averaged 10.57 for controls, compared with 5.76 in the ASD group, and 4.31 in the DCD group.

Children with ASD differed from the other groups in social measures. Social skills were measured using several tools, including the Social Responsivity Scale (SRS Total), which is a parent-completed survey that includes a total score designed to reflect the severity of social deficits in ASD. It is divided into five subscales for parents to assess a child’s social skill impairment: social awareness, social cognition, social communication, social motivation, and mannerisms. Scores for the SRS are calculated in T-scores, in which a score of 50 represents the mean. T-scores of 59 and below are generally not associated with ASD, and patients with these scores are considered to have low to no symptomatology. Scores on the SRS Total in the new study were 45.95, 77.45, and 55.81 for the controls, ASD group, and DCD group, respectively.
 

Results should raise awareness

“The results were largely predicted in our hypotheses – that we would find specific white matter pathways in autism that would differ from [what we saw in typically developing patients and those with DCD], and that diffusivity in ASD would be related to socioemotional differences,” Dr. Aziz-Zadeh said, in an interview.

“What was surprising was that some pathways that had previously been thought to be different in autism were also compromised in DCD, indicating that they were common to motor deficits which both groups shared, not to core autism symptomology,” she noted.

A message for clinicians from the study is that a dual diagnosis of DCD is often missing in ASD practice, said Dr. Aziz-Zadeh. “Given that approximately 80% of children with ASD have DCD, testing for DCD and addressing potential motor issues should be more common practice,” she said.

Dr. Aziz-Zadeh and colleagues are now investigating relationships between the brain, behavior, and the gut microbiome. “We think that understanding autism from a full-body perspective, examining interactions between the brain and the body, will be an important step in this field,” she emphasized.

The study was limited by several factors, including the small sample size, the use of only right-handed participants, and the use of self-reports by children and parents, the researchers noted. Additionally, they noted that white matter develops at different rates in different age groups, and future studies might consider age as a factor, as well as further behavioral assessments, they said.
 

Small sample size limits conclusions

“Understanding the neuroanatomic differences that may contribute to the core symptoms of ASD is a very important goal for the field, particularly how they relate to other comorbid symptoms and neurodevelopmental disorders,” said Michael Gandal, MD, of the department of psychiatry at the University of Pennsylvania, Philadelphia, and a member of the Lifespan Brain Institute at the Children’s Hospital of Philadelphia, in an interview.

“While this study provides some clues into how structural connectivity may relate to motor coordination in ASD, it will be important to replicate these findings in a much larger sample before we can really appreciate how robust these findings are and how well they generalize to the broader ASD population,” Dr. Gandal emphasized.

The study was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development. The researchers had no financial conflicts to disclose. Dr. Gandal had no financial conflicts to disclose.

Researchers have identified a set of 42 genes that are associated with dyslexia, based on data from approximately 50,000 dyslexic individuals and 1 million controls.

Dyslexia occurs in 5%-17% of the general population, depending on the diagnostic criteria, and has been linked with speech and language disorders, as well as ADHD, Catherine Doust, PhD, of the University of Edinburgh and colleagues wrote.

However, previous studies of the genetics of dyslexia are limited, corresponding author Michelle Luciano, PhD, said in an interview. “So much progress has been made in understanding the genetics of behavior and health, but only a small genomewide study of dyslexia existed before ours.”

Currently, genetic testing for dyslexia alone is not done.

“You couldn’t order a genetic test for dyslexia unless it were part of another genetic panel,” according to Herschel Lessin, MD, of Children’s Medical Group, Poughkeepsie, N.Y.

There are also known associations with some genes and autism, but none are definitive, and testing requires a workup of which a genetic panel may be a part. Such tests are expensive, and rarely covered by insurance, the pediatrician explained. 

Experts recommend genetic screening for every child with developmental delay, but most insurance won’t cover it, Dr. Lessin continued.

In the new genomewide association study published in Nature Genetics, the researchers reviewed data from 51,800 adults aged 18 years and older with a self-reported dyslexia diagnosis and 1,087,070 controls. All study participants are enrolled in ongoing research with 23andMe, the personal genetics company.

The researchers investigated the genetic correlations with reading and related skills and evaluated evidence for genes previously associated with dyslexia. The mean ages of the dyslexia cases and controls were 49.6 years and 51.7 years, respectively.

The researchers identified 42 independent genetic variants (genomewide significant loci) associated with dyslexia; 15 of these loci were in genes previously associated with cognitive ability and educational attainment, and 27 were newly identified as specifically associated with dyslexia. The researchers further determined that 12 of the newly identified genes were associated with proficiency in reading and spelling in English and European languages, and 1 in a Chinese-language population.

A polygenic risk score is a way to characterize an individual’s risk of developing a disease, based on the total number of genetic changes related to the disease; the researchers used this score to validate their results. Dyslexia polygenic scores were used to predict reading and spelling in additional population-based and reading disorder–enriched samples outside of the study population; these genetic measures explained up to 6% of variance in reading traits, the researchers noted. Ultimately, these scores may be a tool to help identify children with a predisposition for dyslexia so reading skills support can begin early.

The researchers also found that many of the genes associated with dyslexia are also associated with ADHD, (24% of dyslexia patients reporting ADHD vs. 9% of controls), and with a moderate correlation, which suggests possible shared genetic components for deficits in working memory and attention.

The study findings were limited by the inability to prove causality, and by the potential bias in the study sample, but were strengthened by the large study population, the researchers noted.
 

Potential implications for reading and spelling

“We were surprised that none of the previous dyslexia candidate genes were genomewide significant in our study; all of our discoveries were in new genes that had not been previously implicated in dyslexia,” Dr. Luciano said in an interview. “Some of these genes have been found to be associated with general cognitive ability, but most were novel and may represent genes specifically related to cognitive processes dominant in reading and spelling.

“We were also surprised that there was little genetic correlation (or overlap) with brain MRI variables, given that brain regions have been linked to reading skill. This suggests that the link is environmental in origin,” she added.

“Our results do not directly feed into clinical practice,” said Dr. Luciano. However, “the moderate genetic overlap with ADHD suggests that broader assessments of behavior are important when a child presents with dyslexia, as co-occurrence with other conditions might influence the intervention chosen. Asking about family history of dyslexia might also help in identification.

With more research, genetic studies may find a place in the clinical setting, said Dr. Luciano.  

“As genomewide association studies become larger and the findings more stable, genetic information might be used as an adjunct to what is known about the child’s environment and their performance on standardized tests of reading. The key advantage of genetic information is that it could allow much earlier identification of children who would benefit from extra learning support,” she said.

More research is needed to understand the interaction between genes and the environment, Dr. Luciano said. “It is essential that we understand what environmental learning support can minimize genetic predisposition to dyslexia.”
 

Too soon for clinical utility

The study findings are an important foundation for additional research, but not yet clinically useful, Dr. Lessin said in an interview.

“Dyslexia is a tough diagnosis,” that requires assessment by a developmental pediatrician or a pediatric neurologist and these specialists are often not accessible to many parents, Dr. Lessin noted.

In the current study, the researchers found a number of genes potentially associated with dyslexia, but the study does not prove causality, he emphasized. The findings simply mean that some of these genes may have something to do with dyslexia, and further research might identify a genetic cause.

“No one is going to make a diagnosis of dyslexia based on genes just yet,” said Dr. Lessin. In the meantime, clinicians should be aware that good research is being conducted, and that the genetic foundations for dyslexia are being explored.

Lead author Dr. Doust and corresponding author Dr. Luciano had no financial conflicts to disclose. Several coauthors disclosed support from the Max Planck Society (Germany), the National Natural Science Foundation of China, Funds for Humanities and Social Sciences Research of the Ministry of Education, and General Project of Shaanxi Natural Science Basic Research Program. Two coauthors are employed by and hold stock or stock options in 23andMe. Dr. Lessin had no financial conflicts to disclose, but serves on the editorial advisory board of Pediatric News.

Researchers have identified a set of 42 genes that are associated with dyslexia, based on data from approximately 50,000 dyslexic individuals and 1 million controls.

Dyslexia occurs in 5%-17% of the general population, depending on the diagnostic criteria, and has been linked with speech and language disorders, as well as ADHD, Catherine Doust, PhD, of the University of Edinburgh and colleagues wrote.

However, previous studies of the genetics of dyslexia are limited, corresponding author Michelle Luciano, PhD, said in an interview. “So much progress has been made in understanding the genetics of behavior and health, but only a small genomewide study of dyslexia existed before ours.”

Currently, genetic testing for dyslexia alone is not done.

“You couldn’t order a genetic test for dyslexia unless it were part of another genetic panel,” according to Herschel Lessin, MD, of Children’s Medical Group, Poughkeepsie, N.Y.

There are also known associations with some genes and autism, but none are definitive, and testing requires a workup of which a genetic panel may be a part. Such tests are expensive, and rarely covered by insurance, the pediatrician explained. 

Experts recommend genetic screening for every child with developmental delay, but most insurance won’t cover it, Dr. Lessin continued.

In the new genomewide association study published in Nature Genetics, the researchers reviewed data from 51,800 adults aged 18 years and older with a self-reported dyslexia diagnosis and 1,087,070 controls. All study participants are enrolled in ongoing research with 23andMe, the personal genetics company.

The researchers investigated the genetic correlations with reading and related skills and evaluated evidence for genes previously associated with dyslexia. The mean ages of the dyslexia cases and controls were 49.6 years and 51.7 years, respectively.

The researchers identified 42 independent genetic variants (genomewide significant loci) associated with dyslexia; 15 of these loci were in genes previously associated with cognitive ability and educational attainment, and 27 were newly identified as specifically associated with dyslexia. The researchers further determined that 12 of the newly identified genes were associated with proficiency in reading and spelling in English and European languages, and 1 in a Chinese-language population.

A polygenic risk score is a way to characterize an individual’s risk of developing a disease, based on the total number of genetic changes related to the disease; the researchers used this score to validate their results. Dyslexia polygenic scores were used to predict reading and spelling in additional population-based and reading disorder–enriched samples outside of the study population; these genetic measures explained up to 6% of variance in reading traits, the researchers noted. Ultimately, these scores may be a tool to help identify children with a predisposition for dyslexia so reading skills support can begin early.

The researchers also found that many of the genes associated with dyslexia are also associated with ADHD, (24% of dyslexia patients reporting ADHD vs. 9% of controls), and with a moderate correlation, which suggests possible shared genetic components for deficits in working memory and attention.

The study findings were limited by the inability to prove causality, and by the potential bias in the study sample, but were strengthened by the large study population, the researchers noted.
 

Potential implications for reading and spelling

“We were surprised that none of the previous dyslexia candidate genes were genomewide significant in our study; all of our discoveries were in new genes that had not been previously implicated in dyslexia,” Dr. Luciano said in an interview. “Some of these genes have been found to be associated with general cognitive ability, but most were novel and may represent genes specifically related to cognitive processes dominant in reading and spelling.

“We were also surprised that there was little genetic correlation (or overlap) with brain MRI variables, given that brain regions have been linked to reading skill. This suggests that the link is environmental in origin,” she added.

“Our results do not directly feed into clinical practice,” said Dr. Luciano. However, “the moderate genetic overlap with ADHD suggests that broader assessments of behavior are important when a child presents with dyslexia, as co-occurrence with other conditions might influence the intervention chosen. Asking about family history of dyslexia might also help in identification.

With more research, genetic studies may find a place in the clinical setting, said Dr. Luciano.  

“As genomewide association studies become larger and the findings more stable, genetic information might be used as an adjunct to what is known about the child’s environment and their performance on standardized tests of reading. The key advantage of genetic information is that it could allow much earlier identification of children who would benefit from extra learning support,” she said.

More research is needed to understand the interaction between genes and the environment, Dr. Luciano said. “It is essential that we understand what environmental learning support can minimize genetic predisposition to dyslexia.”
 

Too soon for clinical utility

The study findings are an important foundation for additional research, but not yet clinically useful, Dr. Lessin said in an interview.

“Dyslexia is a tough diagnosis,” that requires assessment by a developmental pediatrician or a pediatric neurologist and these specialists are often not accessible to many parents, Dr. Lessin noted.

In the current study, the researchers found a number of genes potentially associated with dyslexia, but the study does not prove causality, he emphasized. The findings simply mean that some of these genes may have something to do with dyslexia, and further research might identify a genetic cause.

“No one is going to make a diagnosis of dyslexia based on genes just yet,” said Dr. Lessin. In the meantime, clinicians should be aware that good research is being conducted, and that the genetic foundations for dyslexia are being explored.

Lead author Dr. Doust and corresponding author Dr. Luciano had no financial conflicts to disclose. Several coauthors disclosed support from the Max Planck Society (Germany), the National Natural Science Foundation of China, Funds for Humanities and Social Sciences Research of the Ministry of Education, and General Project of Shaanxi Natural Science Basic Research Program. Two coauthors are employed by and hold stock or stock options in 23andMe. Dr. Lessin had no financial conflicts to disclose, but serves on the editorial advisory board of Pediatric News.

Researchers have identified a set of 42 genes that are associated with dyslexia, based on data from approximately 50,000 dyslexic individuals and 1 million controls.

Dyslexia occurs in 5%-17% of the general population, depending on the diagnostic criteria, and has been linked with speech and language disorders, as well as ADHD, Catherine Doust, PhD, of the University of Edinburgh and colleagues wrote.

However, previous studies of the genetics of dyslexia are limited, corresponding author Michelle Luciano, PhD, said in an interview. “So much progress has been made in understanding the genetics of behavior and health, but only a small genomewide study of dyslexia existed before ours.”

Currently, genetic testing for dyslexia alone is not done.

“You couldn’t order a genetic test for dyslexia unless it were part of another genetic panel,” according to Herschel Lessin, MD, of Children’s Medical Group, Poughkeepsie, N.Y.

There are also known associations with some genes and autism, but none are definitive, and testing requires a workup of which a genetic panel may be a part. Such tests are expensive, and rarely covered by insurance, the pediatrician explained. 

Experts recommend genetic screening for every child with developmental delay, but most insurance won’t cover it, Dr. Lessin continued.

In the new genomewide association study published in Nature Genetics, the researchers reviewed data from 51,800 adults aged 18 years and older with a self-reported dyslexia diagnosis and 1,087,070 controls. All study participants are enrolled in ongoing research with 23andMe, the personal genetics company.

The researchers investigated the genetic correlations with reading and related skills and evaluated evidence for genes previously associated with dyslexia. The mean ages of the dyslexia cases and controls were 49.6 years and 51.7 years, respectively.

The researchers identified 42 independent genetic variants (genomewide significant loci) associated with dyslexia; 15 of these loci were in genes previously associated with cognitive ability and educational attainment, and 27 were newly identified as specifically associated with dyslexia. The researchers further determined that 12 of the newly identified genes were associated with proficiency in reading and spelling in English and European languages, and 1 in a Chinese-language population.

A polygenic risk score is a way to characterize an individual’s risk of developing a disease, based on the total number of genetic changes related to the disease; the researchers used this score to validate their results. Dyslexia polygenic scores were used to predict reading and spelling in additional population-based and reading disorder–enriched samples outside of the study population; these genetic measures explained up to 6% of variance in reading traits, the researchers noted. Ultimately, these scores may be a tool to help identify children with a predisposition for dyslexia so reading skills support can begin early.

The researchers also found that many of the genes associated with dyslexia are also associated with ADHD, (24% of dyslexia patients reporting ADHD vs. 9% of controls), and with a moderate correlation, which suggests possible shared genetic components for deficits in working memory and attention.

The study findings were limited by the inability to prove causality, and by the potential bias in the study sample, but were strengthened by the large study population, the researchers noted.
 

Potential implications for reading and spelling

“We were surprised that none of the previous dyslexia candidate genes were genomewide significant in our study; all of our discoveries were in new genes that had not been previously implicated in dyslexia,” Dr. Luciano said in an interview. “Some of these genes have been found to be associated with general cognitive ability, but most were novel and may represent genes specifically related to cognitive processes dominant in reading and spelling.

“We were also surprised that there was little genetic correlation (or overlap) with brain MRI variables, given that brain regions have been linked to reading skill. This suggests that the link is environmental in origin,” she added.

“Our results do not directly feed into clinical practice,” said Dr. Luciano. However, “the moderate genetic overlap with ADHD suggests that broader assessments of behavior are important when a child presents with dyslexia, as co-occurrence with other conditions might influence the intervention chosen. Asking about family history of dyslexia might also help in identification.

With more research, genetic studies may find a place in the clinical setting, said Dr. Luciano.  

“As genomewide association studies become larger and the findings more stable, genetic information might be used as an adjunct to what is known about the child’s environment and their performance on standardized tests of reading. The key advantage of genetic information is that it could allow much earlier identification of children who would benefit from extra learning support,” she said.

More research is needed to understand the interaction between genes and the environment, Dr. Luciano said. “It is essential that we understand what environmental learning support can minimize genetic predisposition to dyslexia.”
 

Too soon for clinical utility

The study findings are an important foundation for additional research, but not yet clinically useful, Dr. Lessin said in an interview.

“Dyslexia is a tough diagnosis,” that requires assessment by a developmental pediatrician or a pediatric neurologist and these specialists are often not accessible to many parents, Dr. Lessin noted.

In the current study, the researchers found a number of genes potentially associated with dyslexia, but the study does not prove causality, he emphasized. The findings simply mean that some of these genes may have something to do with dyslexia, and further research might identify a genetic cause.

“No one is going to make a diagnosis of dyslexia based on genes just yet,” said Dr. Lessin. In the meantime, clinicians should be aware that good research is being conducted, and that the genetic foundations for dyslexia are being explored.

Lead author Dr. Doust and corresponding author Dr. Luciano had no financial conflicts to disclose. Several coauthors disclosed support from the Max Planck Society (Germany), the National Natural Science Foundation of China, Funds for Humanities and Social Sciences Research of the Ministry of Education, and General Project of Shaanxi Natural Science Basic Research Program. Two coauthors are employed by and hold stock or stock options in 23andMe. Dr. Lessin had no financial conflicts to disclose, but serves on the editorial advisory board of Pediatric News.

There’s some good overall news in a large analysis that looked at whether a mother’s COVID-19 infection or birth during the pandemic could affect a baby’s brain development.

Researchers studied 21,419 infants who had neurodevelopmental screening during the pandemic (from January 2020 to January 2021) and compared them with babies born before the pandemic (2015-2019).

They found in an analysis of eight studies that, generally, brain development in infants ages 6-12 months old was not changed by COVID-19.
 

Communication skill scores lower than prepandemic

However, one area did see a significant difference when they looked at answers to the Ages and Stages Questionnaire, 3rd edition (ASQ-3): Scores were lower in communication skills.

Compared with the prepandemic babies, the pandemic group of babies was more likely to have communication impairment (odds were 1.7 times higher).

Additionally, mothers’ SARS-CoV-2 infection was not associated with significant differences in any neurodevelopment sector in offspring, with one exception: Odds were 3.5 times higher for fine motor impairment in the pandemic baby group.

The babies in this study were either exposed in the womb to the SARS-CoV-2 infection or screened during the pandemic regardless of whether they were exposed to the virus.

The study, led by Kamran Hessami, MD, with the Maternal Fetal Care Center at Boston Children’s Hospital and Harvard Medical School in Boston, was published in JAMA Network Open.
 

Potential reasons for lower communication skills

The study points to some factors of the pandemic that may be tied to impaired communication skills.

“Higher levels of COVID-19–related stress were reported for both mothers and fathers of infants aged 0-6 months and were associated with insensitive parenting practices, including decreased emotional responsiveness in only mothers, which could lessen the reciprocal exchanges that support language development in early childhood,” they write. “Additionally, opportunities to promote language and social development through new experiences outside the home, including visits with extended family and friends or attendance at a child care center, were lessened for many during the pandemic.”

Viviana M. Fajardo Martinez, MD, with neonatal/perinatal medicine at University of California, Los Angeles, Health, told this publication her team is also studying child development before and after the pandemic over a 3-year period, and delayed communication skills is something she is seeing in clinic there.

She says some parents have been concerned, saying their babies aren’t talking enough or are behind in vocabulary.
 

Babies can catch up after 12 months

One thing she tells parents is that babies who are a bit delayed at 12 months can catch up.

Up to 18 months, they can catch up, she said, adding that they can be reevaluated then for improvement. If, at that point, the baby is not catching up, “that’s when we refer for early intervention,” she said.

Dr. Martinez also tells parents concerned about their infant’s communication skills that it’s important to talk, read, and sing to their child. She said amid pandemic stress, corners may have been cut in asking children to use language skills.

For instance, if a child points to an apple, a stressed parent may just give the child the apple instead of asking the child to request it by name and repeat the word several times.

She also said a limitation of this study is the use of the ASQ-3 questionnaire, which is filled out by parents. Answers are subjective, she notes, and sometimes differ between one child’s two parents. The questionnaire was commonly used during the pandemic because a more objective, professional evaluation has been more difficult.

However, a measure like the Bayley Scales of Infant and Toddler Development Screening Test adds objectivity and will likely give a better picture as research progresses, Dr. Martinez said. 
 

Some information missing

Andréane Lavallée, PhD, and Dani Dumitriu, MD, PhD, both with the department of pediatrics at Columbia University, New York, write in an invited commentary that the overall positive message of the study “should not make researchers complacent” and results should be viewed with caution.

They point out that the precise effects of this novel virus are still unclear and the age group and variables studied may not tell the whole story.

“It should be noted that this systematic review did not consider timing of exposure during pregnancy, maternal infection severity, or exposure to various SARS-CoV-2 variants – all factors that could eventually be proven to contribute to subtle adverse neurodevelopmental outcomes,” they write.

Additionally, past pandemics “such as the 1918 Spanish flu, 1964 rubella, and 2009 H1N1” have taught researchers to watch for increases in diagnoses such as autism spectrum disorder (ASD) and schizophrenia in subsequent years.

“ASD is generally diagnosed at age 3-5 years (and often not until early teens), while schizophrenia is generally diagnosed in mid-to-late 20s,” the editorialists point out. The authors agree and emphasize the need for long-term studies.

Authors report no relevant financial relationships. Editorialist Dr. Dumitriu reports grants from National Institute of Mental Health, the U.S. Centers for Disease Control and Prevention, and the W. K. Kellogg Foundation; and has received gift funds from Einhorn Collaborative during the conduct of the study to the Nurture Science Program, for which Dr Dumitriu serves as director. Dr. Dumitriu received personal fees from Medela outside the submitted work; and is the corresponding author for one of the studies (Shuffrey et al., 2022) included in the systematic review conducted by Dr. Hessami et al. Dr. Lavallée reports grants from the Canadian Institutes of Health Research. Dr. Martinez reports no relevant financial relationships.
 

There’s some good overall news in a large analysis that looked at whether a mother’s COVID-19 infection or birth during the pandemic could affect a baby’s brain development.

Researchers studied 21,419 infants who had neurodevelopmental screening during the pandemic (from January 2020 to January 2021) and compared them with babies born before the pandemic (2015-2019).

They found in an analysis of eight studies that, generally, brain development in infants ages 6-12 months old was not changed by COVID-19.
 

Communication skill scores lower than prepandemic

However, one area did see a significant difference when they looked at answers to the Ages and Stages Questionnaire, 3rd edition (ASQ-3): Scores were lower in communication skills.

Compared with the prepandemic babies, the pandemic group of babies was more likely to have communication impairment (odds were 1.7 times higher).

Additionally, mothers’ SARS-CoV-2 infection was not associated with significant differences in any neurodevelopment sector in offspring, with one exception: Odds were 3.5 times higher for fine motor impairment in the pandemic baby group.

The babies in this study were either exposed in the womb to the SARS-CoV-2 infection or screened during the pandemic regardless of whether they were exposed to the virus.

The study, led by Kamran Hessami, MD, with the Maternal Fetal Care Center at Boston Children’s Hospital and Harvard Medical School in Boston, was published in JAMA Network Open.
 

Potential reasons for lower communication skills

The study points to some factors of the pandemic that may be tied to impaired communication skills.

“Higher levels of COVID-19–related stress were reported for both mothers and fathers of infants aged 0-6 months and were associated with insensitive parenting practices, including decreased emotional responsiveness in only mothers, which could lessen the reciprocal exchanges that support language development in early childhood,” they write. “Additionally, opportunities to promote language and social development through new experiences outside the home, including visits with extended family and friends or attendance at a child care center, were lessened for many during the pandemic.”

Viviana M. Fajardo Martinez, MD, with neonatal/perinatal medicine at University of California, Los Angeles, Health, told this publication her team is also studying child development before and after the pandemic over a 3-year period, and delayed communication skills is something she is seeing in clinic there.

She says some parents have been concerned, saying their babies aren’t talking enough or are behind in vocabulary.
 

Babies can catch up after 12 months

One thing she tells parents is that babies who are a bit delayed at 12 months can catch up.

Up to 18 months, they can catch up, she said, adding that they can be reevaluated then for improvement. If, at that point, the baby is not catching up, “that’s when we refer for early intervention,” she said.

Dr. Martinez also tells parents concerned about their infant’s communication skills that it’s important to talk, read, and sing to their child. She said amid pandemic stress, corners may have been cut in asking children to use language skills.

For instance, if a child points to an apple, a stressed parent may just give the child the apple instead of asking the child to request it by name and repeat the word several times.

She also said a limitation of this study is the use of the ASQ-3 questionnaire, which is filled out by parents. Answers are subjective, she notes, and sometimes differ between one child’s two parents. The questionnaire was commonly used during the pandemic because a more objective, professional evaluation has been more difficult.

However, a measure like the Bayley Scales of Infant and Toddler Development Screening Test adds objectivity and will likely give a better picture as research progresses, Dr. Martinez said. 
 

Some information missing

Andréane Lavallée, PhD, and Dani Dumitriu, MD, PhD, both with the department of pediatrics at Columbia University, New York, write in an invited commentary that the overall positive message of the study “should not make researchers complacent” and results should be viewed with caution.

They point out that the precise effects of this novel virus are still unclear and the age group and variables studied may not tell the whole story.

“It should be noted that this systematic review did not consider timing of exposure during pregnancy, maternal infection severity, or exposure to various SARS-CoV-2 variants – all factors that could eventually be proven to contribute to subtle adverse neurodevelopmental outcomes,” they write.

Additionally, past pandemics “such as the 1918 Spanish flu, 1964 rubella, and 2009 H1N1” have taught researchers to watch for increases in diagnoses such as autism spectrum disorder (ASD) and schizophrenia in subsequent years.

“ASD is generally diagnosed at age 3-5 years (and often not until early teens), while schizophrenia is generally diagnosed in mid-to-late 20s,” the editorialists point out. The authors agree and emphasize the need for long-term studies.

Authors report no relevant financial relationships. Editorialist Dr. Dumitriu reports grants from National Institute of Mental Health, the U.S. Centers for Disease Control and Prevention, and the W. K. Kellogg Foundation; and has received gift funds from Einhorn Collaborative during the conduct of the study to the Nurture Science Program, for which Dr Dumitriu serves as director. Dr. Dumitriu received personal fees from Medela outside the submitted work; and is the corresponding author for one of the studies (Shuffrey et al., 2022) included in the systematic review conducted by Dr. Hessami et al. Dr. Lavallée reports grants from the Canadian Institutes of Health Research. Dr. Martinez reports no relevant financial relationships.
 

There’s some good overall news in a large analysis that looked at whether a mother’s COVID-19 infection or birth during the pandemic could affect a baby’s brain development.

Researchers studied 21,419 infants who had neurodevelopmental screening during the pandemic (from January 2020 to January 2021) and compared them with babies born before the pandemic (2015-2019).

They found in an analysis of eight studies that, generally, brain development in infants ages 6-12 months old was not changed by COVID-19.
 

Communication skill scores lower than prepandemic

However, one area did see a significant difference when they looked at answers to the Ages and Stages Questionnaire, 3rd edition (ASQ-3): Scores were lower in communication skills.

Compared with the prepandemic babies, the pandemic group of babies was more likely to have communication impairment (odds were 1.7 times higher).

Additionally, mothers’ SARS-CoV-2 infection was not associated with significant differences in any neurodevelopment sector in offspring, with one exception: Odds were 3.5 times higher for fine motor impairment in the pandemic baby group.

The babies in this study were either exposed in the womb to the SARS-CoV-2 infection or screened during the pandemic regardless of whether they were exposed to the virus.

The study, led by Kamran Hessami, MD, with the Maternal Fetal Care Center at Boston Children’s Hospital and Harvard Medical School in Boston, was published in JAMA Network Open.
 

Potential reasons for lower communication skills

The study points to some factors of the pandemic that may be tied to impaired communication skills.

“Higher levels of COVID-19–related stress were reported for both mothers and fathers of infants aged 0-6 months and were associated with insensitive parenting practices, including decreased emotional responsiveness in only mothers, which could lessen the reciprocal exchanges that support language development in early childhood,” they write. “Additionally, opportunities to promote language and social development through new experiences outside the home, including visits with extended family and friends or attendance at a child care center, were lessened for many during the pandemic.”

Viviana M. Fajardo Martinez, MD, with neonatal/perinatal medicine at University of California, Los Angeles, Health, told this publication her team is also studying child development before and after the pandemic over a 3-year period, and delayed communication skills is something she is seeing in clinic there.

She says some parents have been concerned, saying their babies aren’t talking enough or are behind in vocabulary.
 

Babies can catch up after 12 months

One thing she tells parents is that babies who are a bit delayed at 12 months can catch up.

Up to 18 months, they can catch up, she said, adding that they can be reevaluated then for improvement. If, at that point, the baby is not catching up, “that’s when we refer for early intervention,” she said.

Dr. Martinez also tells parents concerned about their infant’s communication skills that it’s important to talk, read, and sing to their child. She said amid pandemic stress, corners may have been cut in asking children to use language skills.

For instance, if a child points to an apple, a stressed parent may just give the child the apple instead of asking the child to request it by name and repeat the word several times.

She also said a limitation of this study is the use of the ASQ-3 questionnaire, which is filled out by parents. Answers are subjective, she notes, and sometimes differ between one child’s two parents. The questionnaire was commonly used during the pandemic because a more objective, professional evaluation has been more difficult.

However, a measure like the Bayley Scales of Infant and Toddler Development Screening Test adds objectivity and will likely give a better picture as research progresses, Dr. Martinez said. 
 

Some information missing

Andréane Lavallée, PhD, and Dani Dumitriu, MD, PhD, both with the department of pediatrics at Columbia University, New York, write in an invited commentary that the overall positive message of the study “should not make researchers complacent” and results should be viewed with caution.

They point out that the precise effects of this novel virus are still unclear and the age group and variables studied may not tell the whole story.

“It should be noted that this systematic review did not consider timing of exposure during pregnancy, maternal infection severity, or exposure to various SARS-CoV-2 variants – all factors that could eventually be proven to contribute to subtle adverse neurodevelopmental outcomes,” they write.

Additionally, past pandemics “such as the 1918 Spanish flu, 1964 rubella, and 2009 H1N1” have taught researchers to watch for increases in diagnoses such as autism spectrum disorder (ASD) and schizophrenia in subsequent years.

“ASD is generally diagnosed at age 3-5 years (and often not until early teens), while schizophrenia is generally diagnosed in mid-to-late 20s,” the editorialists point out. The authors agree and emphasize the need for long-term studies.

Authors report no relevant financial relationships. Editorialist Dr. Dumitriu reports grants from National Institute of Mental Health, the U.S. Centers for Disease Control and Prevention, and the W. K. Kellogg Foundation; and has received gift funds from Einhorn Collaborative during the conduct of the study to the Nurture Science Program, for which Dr Dumitriu serves as director. Dr. Dumitriu received personal fees from Medela outside the submitted work; and is the corresponding author for one of the studies (Shuffrey et al., 2022) included in the systematic review conducted by Dr. Hessami et al. Dr. Lavallée reports grants from the Canadian Institutes of Health Research. Dr. Martinez reports no relevant financial relationships.
 

Words including death, die, dying, or stillborn were frequently replaced by euphemisms in meetings between clinicians and families of critically ill children, based on data from 33 family meetings that involved discussions of death.

Clear communication is essential in discussing death with patients and families and current consensus guidelines recommend against use of euphemisms; data also suggest that patients and families prefer clear and direct language, wrote Margaret H. Barlet, of Duke University, Durham, N.C., and colleagues.

However, data on the language used in discussions of death in neonatal or pediatric contexts are limited, they said.

In a study published in JAMA Network Open, the researchers reviewed conversations between clinicians and parents of critically ill children. The study participants included 20 parents of 13 infants with neurological conditions who were hospitalized in a pediatric ICU in a single center in the southeastern United States between September 2018 and September 2020. Family meetings were scheduled to discuss prognosis and whether to start, not start, or discontinue life-sustaining treatment. The discussions were recorded, transcribed, and deidentified. The median age of the parents was 28.5 years; 60% identified as Black, 40% as White, and 10% as Asian; with some selecting more than one race.

For all 13 infants, one parent identified as the infant’s mother, and another parent identified as the father for seven of the infants. The median gestational age of the infants was 37 weeks; 54% were female, and the median hospital stay was 86 days.

Twelve infants (92%) required mechanical ventilation, six required chest compressions, and five had a do-not-attempt resuscitation order placed. Two infants died during the hospital admission process.

The primary outcome of the study was language used to reference death during family meetings between doctors and families. In the family conversations, death was referenced 406 times (275 times by clinicians and 131 times by family members).

Families were more likely than were clinicians to use the words die, death, dying, or stillborn; these terms appeared in 19 of 131 references by families and 13 of 275 references by clinicians (15% vs. 5%).

In addition to a category for use of words such as die, death, dying, or stillborn, the researchers identified four types of euphemisms used in place of these terms. They characterized the types of euphemisms as survival framing (for example, not live), colloquialisms (for example, pass away), medical jargon or use of physiologic terms (for example, code event or irrecoverable heart rate drop) and the use of pronouns without an antecedent (for example, it might happen soon).

Overall, 92% of references to death in the conversations were euphemistic. Medical jargon was the most common type of euphemism used by clinicians (118 of 275 references, 43%), while colloquialism was the most common type used by family members (44 of 131 references, 34%).

The results are consistent with limited research on this topic and show the high rates of euphemistic language used in discussions of death, the researchers wrote in their discussion. “Although our work did not directly evaluate the comparative clarity of different ways to reference death, our results raise questions about what language is most clear,” they said. The researchers proposed that their classification of euphemistic language may provide a framework for the use of language in discussions of death and may prompt clinicians to notice the language they use and hear from patients and families. “Empirically evaluating the perceived clarity of euphemism types and their effects on shared decision-making should be a priority for future study and should be used to inform interventions for improving communication in this context,” they said.

The findings were limited by several factors including the use of data from a single institution and the exclusion of non-English speaking families, the researchers noted. In addition, the researchers studied only what was said, therefore “questions about speaker motivation, listener understanding, and the effects of language choice on decision-making remain unanswered,” they added.

However, the results reflect the frequent use of euphemisms by both clinicians and families, and more research is needed to assess the effect of language on understanding, decision-making, and doctor-patient relationships, the researchers concluded.
 

Euphemisms can create confusion but may increase empathy

“Ms. Barlet and colleagues provide further consideration of types of speech that may obscure a clinician’s intended meaning or distract from their true point in the context of family discussions about critically ill patients,” Michael B. Pitt, MD, of the University of Minnesota, Minneapolis, and colleagues wrote in an accompanying editorial. Using a euphemism such as “pass on” instead of “die” may be an intentional choice by physicians to use less harsh language but it may still cause confusion, they noted.

The study showed how frequently physicians use euphemisms to talk about death but was distinctive in the inclusion of data on language use by families as well, they said.

“This pattern of use identified among the infants’ families may indicate that despite the clinical recommendation that end-of-life discussions avoid the use of euphemisms, it may be worth noting and responding to families’ language preferences accordingly once it is clear they have expressed understanding that the clinician is speaking of death,” they said. For example, if a family is consistently using softer terminology, clinicians should consider responding with similar terms, rather than using medical jargon or the words death or dying, they wrote.

“As the authors note, family preferences for this type of discussion are an important target for future research aimed at optimizing family-centered communication,” the editorialists added.
 

Families seek clarity in communication

“Clinicians have an important role in helping parents of seriously ill children understand their child’s health condition and make value-driven decisions about care,” Jennifer W. Mack, MD, of Harvard Medical School and the Dana-Farber Cancer Institute, Boston, said in an interview. “The words that clinicians use can have a significant impact on the knowledge parents take away from encounters and the decisions they make. While there is evidence of euphemistic language in the adult setting, there is limited information about this in children,” said Dr. Mack, a pediatric hematologist/oncologist who was not involved in the study.

Dr. Mack said she was not entirely surprised that in the current study, clinician language often includes medical jargon and an avoidance of direct language about death. “This is consistent with what I have seen in clinical practice,” she said. “One striking aspect of the study is that parents used terms like death or die more often than clinicians, and they sometimes used these terms as a way to clarify what the clinician was saying. This suggests to me that parents often want clarity, even if the information is very difficult,” she said.

The key message of the study is that clinicians should pay attention to the words they use to talk about the possibility of death and recognize the tendency of many clinicians to fall back on medical jargon, said Dr. Mack.

“My personal belief is that it is possible to be both clear and compassionate, and clinicians should strive for both in these conversations, to support families and help them make their best decisions for their children,” she said. “We need to remember a single communication strategy or choice of words is not likely to feel supportive to every family; what is helpful for one family may feel painful to another,” she emphasized. “Being willing to listen to the needs they express and their own language choice can help us to be responsive to individual needs,” she added.

An important next step for research is to learn more about what families experience as supportive during conversations with clinicians about death and dying, Dr. Mack said.

The study was supported by the National Institute of Neurological Disorders and Stroke, National Institutes of Health, and the Doris Duke Charitable Foundation. The researchers, editorial authors, and Dr. Mack had no financial conflicts to disclose.

Words including death, die, dying, or stillborn were frequently replaced by euphemisms in meetings between clinicians and families of critically ill children, based on data from 33 family meetings that involved discussions of death.

Clear communication is essential in discussing death with patients and families and current consensus guidelines recommend against use of euphemisms; data also suggest that patients and families prefer clear and direct language, wrote Margaret H. Barlet, of Duke University, Durham, N.C., and colleagues.

However, data on the language used in discussions of death in neonatal or pediatric contexts are limited, they said.

In a study published in JAMA Network Open, the researchers reviewed conversations between clinicians and parents of critically ill children. The study participants included 20 parents of 13 infants with neurological conditions who were hospitalized in a pediatric ICU in a single center in the southeastern United States between September 2018 and September 2020. Family meetings were scheduled to discuss prognosis and whether to start, not start, or discontinue life-sustaining treatment. The discussions were recorded, transcribed, and deidentified. The median age of the parents was 28.5 years; 60% identified as Black, 40% as White, and 10% as Asian; with some selecting more than one race.

For all 13 infants, one parent identified as the infant’s mother, and another parent identified as the father for seven of the infants. The median gestational age of the infants was 37 weeks; 54% were female, and the median hospital stay was 86 days.

Twelve infants (92%) required mechanical ventilation, six required chest compressions, and five had a do-not-attempt resuscitation order placed. Two infants died during the hospital admission process.

The primary outcome of the study was language used to reference death during family meetings between doctors and families. In the family conversations, death was referenced 406 times (275 times by clinicians and 131 times by family members).

Families were more likely than were clinicians to use the words die, death, dying, or stillborn; these terms appeared in 19 of 131 references by families and 13 of 275 references by clinicians (15% vs. 5%).

In addition to a category for use of words such as die, death, dying, or stillborn, the researchers identified four types of euphemisms used in place of these terms. They characterized the types of euphemisms as survival framing (for example, not live), colloquialisms (for example, pass away), medical jargon or use of physiologic terms (for example, code event or irrecoverable heart rate drop) and the use of pronouns without an antecedent (for example, it might happen soon).

Overall, 92% of references to death in the conversations were euphemistic. Medical jargon was the most common type of euphemism used by clinicians (118 of 275 references, 43%), while colloquialism was the most common type used by family members (44 of 131 references, 34%).

The results are consistent with limited research on this topic and show the high rates of euphemistic language used in discussions of death, the researchers wrote in their discussion. “Although our work did not directly evaluate the comparative clarity of different ways to reference death, our results raise questions about what language is most clear,” they said. The researchers proposed that their classification of euphemistic language may provide a framework for the use of language in discussions of death and may prompt clinicians to notice the language they use and hear from patients and families. “Empirically evaluating the perceived clarity of euphemism types and their effects on shared decision-making should be a priority for future study and should be used to inform interventions for improving communication in this context,” they said.

The findings were limited by several factors including the use of data from a single institution and the exclusion of non-English speaking families, the researchers noted. In addition, the researchers studied only what was said, therefore “questions about speaker motivation, listener understanding, and the effects of language choice on decision-making remain unanswered,” they added.

However, the results reflect the frequent use of euphemisms by both clinicians and families, and more research is needed to assess the effect of language on understanding, decision-making, and doctor-patient relationships, the researchers concluded.
 

Euphemisms can create confusion but may increase empathy

“Ms. Barlet and colleagues provide further consideration of types of speech that may obscure a clinician’s intended meaning or distract from their true point in the context of family discussions about critically ill patients,” Michael B. Pitt, MD, of the University of Minnesota, Minneapolis, and colleagues wrote in an accompanying editorial. Using a euphemism such as “pass on” instead of “die” may be an intentional choice by physicians to use less harsh language but it may still cause confusion, they noted.

The study showed how frequently physicians use euphemisms to talk about death but was distinctive in the inclusion of data on language use by families as well, they said.

“This pattern of use identified among the infants’ families may indicate that despite the clinical recommendation that end-of-life discussions avoid the use of euphemisms, it may be worth noting and responding to families’ language preferences accordingly once it is clear they have expressed understanding that the clinician is speaking of death,” they said. For example, if a family is consistently using softer terminology, clinicians should consider responding with similar terms, rather than using medical jargon or the words death or dying, they wrote.

“As the authors note, family preferences for this type of discussion are an important target for future research aimed at optimizing family-centered communication,” the editorialists added.
 

Families seek clarity in communication

“Clinicians have an important role in helping parents of seriously ill children understand their child’s health condition and make value-driven decisions about care,” Jennifer W. Mack, MD, of Harvard Medical School and the Dana-Farber Cancer Institute, Boston, said in an interview. “The words that clinicians use can have a significant impact on the knowledge parents take away from encounters and the decisions they make. While there is evidence of euphemistic language in the adult setting, there is limited information about this in children,” said Dr. Mack, a pediatric hematologist/oncologist who was not involved in the study.

Dr. Mack said she was not entirely surprised that in the current study, clinician language often includes medical jargon and an avoidance of direct language about death. “This is consistent with what I have seen in clinical practice,” she said. “One striking aspect of the study is that parents used terms like death or die more often than clinicians, and they sometimes used these terms as a way to clarify what the clinician was saying. This suggests to me that parents often want clarity, even if the information is very difficult,” she said.

The key message of the study is that clinicians should pay attention to the words they use to talk about the possibility of death and recognize the tendency of many clinicians to fall back on medical jargon, said Dr. Mack.

“My personal belief is that it is possible to be both clear and compassionate, and clinicians should strive for both in these conversations, to support families and help them make their best decisions for their children,” she said. “We need to remember a single communication strategy or choice of words is not likely to feel supportive to every family; what is helpful for one family may feel painful to another,” she emphasized. “Being willing to listen to the needs they express and their own language choice can help us to be responsive to individual needs,” she added.

An important next step for research is to learn more about what families experience as supportive during conversations with clinicians about death and dying, Dr. Mack said.

The study was supported by the National Institute of Neurological Disorders and Stroke, National Institutes of Health, and the Doris Duke Charitable Foundation. The researchers, editorial authors, and Dr. Mack had no financial conflicts to disclose.

Words including death, die, dying, or stillborn were frequently replaced by euphemisms in meetings between clinicians and families of critically ill children, based on data from 33 family meetings that involved discussions of death.

Clear communication is essential in discussing death with patients and families and current consensus guidelines recommend against use of euphemisms; data also suggest that patients and families prefer clear and direct language, wrote Margaret H. Barlet, of Duke University, Durham, N.C., and colleagues.

However, data on the language used in discussions of death in neonatal or pediatric contexts are limited, they said.

In a study published in JAMA Network Open, the researchers reviewed conversations between clinicians and parents of critically ill children. The study participants included 20 parents of 13 infants with neurological conditions who were hospitalized in a pediatric ICU in a single center in the southeastern United States between September 2018 and September 2020. Family meetings were scheduled to discuss prognosis and whether to start, not start, or discontinue life-sustaining treatment. The discussions were recorded, transcribed, and deidentified. The median age of the parents was 28.5 years; 60% identified as Black, 40% as White, and 10% as Asian; with some selecting more than one race.

For all 13 infants, one parent identified as the infant’s mother, and another parent identified as the father for seven of the infants. The median gestational age of the infants was 37 weeks; 54% were female, and the median hospital stay was 86 days.

Twelve infants (92%) required mechanical ventilation, six required chest compressions, and five had a do-not-attempt resuscitation order placed. Two infants died during the hospital admission process.

The primary outcome of the study was language used to reference death during family meetings between doctors and families. In the family conversations, death was referenced 406 times (275 times by clinicians and 131 times by family members).

Families were more likely than were clinicians to use the words die, death, dying, or stillborn; these terms appeared in 19 of 131 references by families and 13 of 275 references by clinicians (15% vs. 5%).

In addition to a category for use of words such as die, death, dying, or stillborn, the researchers identified four types of euphemisms used in place of these terms. They characterized the types of euphemisms as survival framing (for example, not live), colloquialisms (for example, pass away), medical jargon or use of physiologic terms (for example, code event or irrecoverable heart rate drop) and the use of pronouns without an antecedent (for example, it might happen soon).

Overall, 92% of references to death in the conversations were euphemistic. Medical jargon was the most common type of euphemism used by clinicians (118 of 275 references, 43%), while colloquialism was the most common type used by family members (44 of 131 references, 34%).

The results are consistent with limited research on this topic and show the high rates of euphemistic language used in discussions of death, the researchers wrote in their discussion. “Although our work did not directly evaluate the comparative clarity of different ways to reference death, our results raise questions about what language is most clear,” they said. The researchers proposed that their classification of euphemistic language may provide a framework for the use of language in discussions of death and may prompt clinicians to notice the language they use and hear from patients and families. “Empirically evaluating the perceived clarity of euphemism types and their effects on shared decision-making should be a priority for future study and should be used to inform interventions for improving communication in this context,” they said.

The findings were limited by several factors including the use of data from a single institution and the exclusion of non-English speaking families, the researchers noted. In addition, the researchers studied only what was said, therefore “questions about speaker motivation, listener understanding, and the effects of language choice on decision-making remain unanswered,” they added.

However, the results reflect the frequent use of euphemisms by both clinicians and families, and more research is needed to assess the effect of language on understanding, decision-making, and doctor-patient relationships, the researchers concluded.
 

Euphemisms can create confusion but may increase empathy

“Ms. Barlet and colleagues provide further consideration of types of speech that may obscure a clinician’s intended meaning or distract from their true point in the context of family discussions about critically ill patients,” Michael B. Pitt, MD, of the University of Minnesota, Minneapolis, and colleagues wrote in an accompanying editorial. Using a euphemism such as “pass on” instead of “die” may be an intentional choice by physicians to use less harsh language but it may still cause confusion, they noted.

The study showed how frequently physicians use euphemisms to talk about death but was distinctive in the inclusion of data on language use by families as well, they said.

“This pattern of use identified among the infants’ families may indicate that despite the clinical recommendation that end-of-life discussions avoid the use of euphemisms, it may be worth noting and responding to families’ language preferences accordingly once it is clear they have expressed understanding that the clinician is speaking of death,” they said. For example, if a family is consistently using softer terminology, clinicians should consider responding with similar terms, rather than using medical jargon or the words death or dying, they wrote.

“As the authors note, family preferences for this type of discussion are an important target for future research aimed at optimizing family-centered communication,” the editorialists added.
 

Families seek clarity in communication

“Clinicians have an important role in helping parents of seriously ill children understand their child’s health condition and make value-driven decisions about care,” Jennifer W. Mack, MD, of Harvard Medical School and the Dana-Farber Cancer Institute, Boston, said in an interview. “The words that clinicians use can have a significant impact on the knowledge parents take away from encounters and the decisions they make. While there is evidence of euphemistic language in the adult setting, there is limited information about this in children,” said Dr. Mack, a pediatric hematologist/oncologist who was not involved in the study.

Dr. Mack said she was not entirely surprised that in the current study, clinician language often includes medical jargon and an avoidance of direct language about death. “This is consistent with what I have seen in clinical practice,” she said. “One striking aspect of the study is that parents used terms like death or die more often than clinicians, and they sometimes used these terms as a way to clarify what the clinician was saying. This suggests to me that parents often want clarity, even if the information is very difficult,” she said.

The key message of the study is that clinicians should pay attention to the words they use to talk about the possibility of death and recognize the tendency of many clinicians to fall back on medical jargon, said Dr. Mack.

“My personal belief is that it is possible to be both clear and compassionate, and clinicians should strive for both in these conversations, to support families and help them make their best decisions for their children,” she said. “We need to remember a single communication strategy or choice of words is not likely to feel supportive to every family; what is helpful for one family may feel painful to another,” she emphasized. “Being willing to listen to the needs they express and their own language choice can help us to be responsive to individual needs,” she added.

An important next step for research is to learn more about what families experience as supportive during conversations with clinicians about death and dying, Dr. Mack said.

The study was supported by the National Institute of Neurological Disorders and Stroke, National Institutes of Health, and the Doris Duke Charitable Foundation. The researchers, editorial authors, and Dr. Mack had no financial conflicts to disclose.

Tourette syndrome, attention-deficit/hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), and autism spectrum disorder (ASD) share significant overlap in symptomatology, and it can be challenging at times to distinguish between these conditions. Being able to do so, however, can help guide more targeted interventions and accommodations to optimize a patient’s level of functioning.

Oregon Health & Science University (OHSU)

Case example

A healthy, bright 6-year-old boy is referred by his family doctor to an academic medical center for a full team evaluation because of suspicion of ASD, after having already been diagnosed with ADHD at the age of 5. His difficulties with inattention, impulsivity, and hyperactivity, as well as his behavioral rigidities and sensory avoidant and sensory seeking behaviors have caused functional impairments for him in his kindergarten classroom. He has been penalized with removal of recess on more than one occasion. A low dose of a stimulant had been tried but resulted in a perceived increase in disruptive behaviors.

The boy, while hyperkinetic and often paying poor attention, is quite capable of high-quality and well-modulated eye contact paired with typical social referencing and reciprocity when actively engaging with the examiner and his parents. He does have a reported history of serial fixated interests and some repetitive behaviors but is also noted to be flexible in his interpersonal style, maintains other varied and typical interests, easily directs affect, utilizes a wide array of fluid gestures paired naturally with verbal communication, and shares enjoyment with smoothly coordinated gaze. He has mild articulation errors but uses pronouns appropriately and has no scripted speech or echolalia, though does engage in some whispered palilalia intermittently.

He is generally quite cooperative and redirectable when focused and has a completely normal physical and neurologic examination. During the visit, the doctor notices the boy making an intermittent honking sound, which parents report as an attention-seeking strategy during times of stress. Further physician-guided information gathering around other repetitive noises and movements elicits a history of engagement in repetitive hand-to-groin movements, some exaggerated blinking, and a number of other waxing and waning subtle motor and phonic tics with onset in preschool. These noises and movements have generally been identified as “fidgeting” and “misbehaving” by well-meaning caregivers in the home and school environments.

Both Tourette syndrome and ASD are more common in males, with stereotyped patterns of movements and behaviors; anxious, obsessive, and compulsive behaviors resulting in behavioral rigidities; sensory sensitivities; and increased rates of hyperkinesis with decreased impulse control which result in increased sensory-seeking behaviors. Diagnostic criteria for Tourette syndrome are met when a child has had multiple motor tics and at least one phonic tic present for at least 1 year, with tic-free intervals lasting no longer than 3 months, and with onset before the age of 18. Typically, tics emerge in late preschool and early grade school, and some children even develop repetitive movements as early as toddlerhood. Tics tend to worsen around the peripubertal era, then often generally improve in the teen years. Tic types, frequency, and severity general fluctuate over time.

Forty percent of children with Tourette syndrome also meet criteria for OCD, with many more having OCD traits, and about 65% of children with Tourette syndrome also meet criteria for ADHD, with many more having ADHD traits. OCD can lead to more rigid and directive social interactions in children as well as obsessive interests, just as ADHD can lead to less socially attuned and less cooperative behaviors, even in children who do not meet criteria for ASD.

For example, a child with OCD in the absence of ASD may still “police” other kids in class and be overly focused on the rules of a game, which may become a social liability. Likewise, a child with ADHD in the absence of ASD may be so distractible that focusing on what other kids are saying and their paired facial expressions is compromised, leading to poor-quality social reciprocity during interactions with peers. Given the remarkable overlap in shared symptoms, it is essential for pediatric providers to consider Tourette syndrome in the differential for any child with repetitive movements and behaviors in addition to ASD and a wide array of other neurodevelopment differences, including global developmental delays and intellectual disabilities. This is of particular importance as the diagnosis of Tourette syndrome can be used to gain access to developmental disability services if the condition has resulted in true adaptive impairments.

It is determined that the boy does in fact meet criteria for ADHD, but also for OCD and Tourette syndrome. Both his Autism Diagnostic Observation Schedule and DSM-5–influenced autism interview are found to be in the nonclinical ranges, given his quality of communication, social engagement, imaginative play, and varied interests. A diagnosis of ASD is not felt to be an appropriate conceptualization of his neurodevelopmental differences. He is started on a low dose of guanfacine, which induces a decline in tics, impulsivity, and hyperkinesis. He is given a 504 plan in school that includes scheduled “tic breaks,” sensory fidgets for use in the classroom, extra movement opportunities as needed, and utilization of a gentle cueing system between him and his teacher for low-key redirection of disruptive behaviors. He is no longer penalized for inattention or tics, and his 504 plan protects him from the use of recess removal as a behavioral modification strategy.

His parents enroll him in the community swim program for extra exercise, focus on decreasing screen time, and give him an earlier bedtime to help decrease his tics and rigidities, while improving his ability to self-regulate. Eventually, a low dose of a newer-generation stimulant is added to his guanfacine, with excellent results and only a mild increase in tolerable tics.

The child in the vignette did well with a 504 plan based on his medical diagnoses, though if related learning difficulties had persisted, eligibility under Other Health Impaired could be used to provide eligibility for an Individualized Education Plan. Alpha-agonists can be helpful for symptom control in those with Tourette syndrome by simultaneously treating tics, hyperkinesis, and impulsivity, while decreasing the risk of tic exacerbation with use of stimulants. Overall, understanding the neurodiversity related to Tourette syndrome can help providers advocate for home and community-based supports to optimize general functioning and quality of life.

Dr. Roth is a developmental and behavioral pediatrician in Eugene, Ore. She has no conflicts of interest.

References

Darrow S et al. J Am Acad Child Adolescent Psych. 2017;56(7):610-7.

AAP Section on Developmental and Behavioral Pediatrics. Developmental and Behavioral Pediatrics. Voigt RG et al, eds. 2018: American Academy of Pediatrics.

Tourette syndrome, attention-deficit/hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), and autism spectrum disorder (ASD) share significant overlap in symptomatology, and it can be challenging at times to distinguish between these conditions. Being able to do so, however, can help guide more targeted interventions and accommodations to optimize a patient’s level of functioning.

Oregon Health & Science University (OHSU)

Case example

A healthy, bright 6-year-old boy is referred by his family doctor to an academic medical center for a full team evaluation because of suspicion of ASD, after having already been diagnosed with ADHD at the age of 5. His difficulties with inattention, impulsivity, and hyperactivity, as well as his behavioral rigidities and sensory avoidant and sensory seeking behaviors have caused functional impairments for him in his kindergarten classroom. He has been penalized with removal of recess on more than one occasion. A low dose of a stimulant had been tried but resulted in a perceived increase in disruptive behaviors.

The boy, while hyperkinetic and often paying poor attention, is quite capable of high-quality and well-modulated eye contact paired with typical social referencing and reciprocity when actively engaging with the examiner and his parents. He does have a reported history of serial fixated interests and some repetitive behaviors but is also noted to be flexible in his interpersonal style, maintains other varied and typical interests, easily directs affect, utilizes a wide array of fluid gestures paired naturally with verbal communication, and shares enjoyment with smoothly coordinated gaze. He has mild articulation errors but uses pronouns appropriately and has no scripted speech or echolalia, though does engage in some whispered palilalia intermittently.

He is generally quite cooperative and redirectable when focused and has a completely normal physical and neurologic examination. During the visit, the doctor notices the boy making an intermittent honking sound, which parents report as an attention-seeking strategy during times of stress. Further physician-guided information gathering around other repetitive noises and movements elicits a history of engagement in repetitive hand-to-groin movements, some exaggerated blinking, and a number of other waxing and waning subtle motor and phonic tics with onset in preschool. These noises and movements have generally been identified as “fidgeting” and “misbehaving” by well-meaning caregivers in the home and school environments.

Both Tourette syndrome and ASD are more common in males, with stereotyped patterns of movements and behaviors; anxious, obsessive, and compulsive behaviors resulting in behavioral rigidities; sensory sensitivities; and increased rates of hyperkinesis with decreased impulse control which result in increased sensory-seeking behaviors. Diagnostic criteria for Tourette syndrome are met when a child has had multiple motor tics and at least one phonic tic present for at least 1 year, with tic-free intervals lasting no longer than 3 months, and with onset before the age of 18. Typically, tics emerge in late preschool and early grade school, and some children even develop repetitive movements as early as toddlerhood. Tics tend to worsen around the peripubertal era, then often generally improve in the teen years. Tic types, frequency, and severity general fluctuate over time.

Forty percent of children with Tourette syndrome also meet criteria for OCD, with many more having OCD traits, and about 65% of children with Tourette syndrome also meet criteria for ADHD, with many more having ADHD traits. OCD can lead to more rigid and directive social interactions in children as well as obsessive interests, just as ADHD can lead to less socially attuned and less cooperative behaviors, even in children who do not meet criteria for ASD.

For example, a child with OCD in the absence of ASD may still “police” other kids in class and be overly focused on the rules of a game, which may become a social liability. Likewise, a child with ADHD in the absence of ASD may be so distractible that focusing on what other kids are saying and their paired facial expressions is compromised, leading to poor-quality social reciprocity during interactions with peers. Given the remarkable overlap in shared symptoms, it is essential for pediatric providers to consider Tourette syndrome in the differential for any child with repetitive movements and behaviors in addition to ASD and a wide array of other neurodevelopment differences, including global developmental delays and intellectual disabilities. This is of particular importance as the diagnosis of Tourette syndrome can be used to gain access to developmental disability services if the condition has resulted in true adaptive impairments.

It is determined that the boy does in fact meet criteria for ADHD, but also for OCD and Tourette syndrome. Both his Autism Diagnostic Observation Schedule and DSM-5–influenced autism interview are found to be in the nonclinical ranges, given his quality of communication, social engagement, imaginative play, and varied interests. A diagnosis of ASD is not felt to be an appropriate conceptualization of his neurodevelopmental differences. He is started on a low dose of guanfacine, which induces a decline in tics, impulsivity, and hyperkinesis. He is given a 504 plan in school that includes scheduled “tic breaks,” sensory fidgets for use in the classroom, extra movement opportunities as needed, and utilization of a gentle cueing system between him and his teacher for low-key redirection of disruptive behaviors. He is no longer penalized for inattention or tics, and his 504 plan protects him from the use of recess removal as a behavioral modification strategy.

His parents enroll him in the community swim program for extra exercise, focus on decreasing screen time, and give him an earlier bedtime to help decrease his tics and rigidities, while improving his ability to self-regulate. Eventually, a low dose of a newer-generation stimulant is added to his guanfacine, with excellent results and only a mild increase in tolerable tics.

The child in the vignette did well with a 504 plan based on his medical diagnoses, though if related learning difficulties had persisted, eligibility under Other Health Impaired could be used to provide eligibility for an Individualized Education Plan. Alpha-agonists can be helpful for symptom control in those with Tourette syndrome by simultaneously treating tics, hyperkinesis, and impulsivity, while decreasing the risk of tic exacerbation with use of stimulants. Overall, understanding the neurodiversity related to Tourette syndrome can help providers advocate for home and community-based supports to optimize general functioning and quality of life.

Dr. Roth is a developmental and behavioral pediatrician in Eugene, Ore. She has no conflicts of interest.

References

Darrow S et al. J Am Acad Child Adolescent Psych. 2017;56(7):610-7.

AAP Section on Developmental and Behavioral Pediatrics. Developmental and Behavioral Pediatrics. Voigt RG et al, eds. 2018: American Academy of Pediatrics.

Tourette syndrome, attention-deficit/hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), and autism spectrum disorder (ASD) share significant overlap in symptomatology, and it can be challenging at times to distinguish between these conditions. Being able to do so, however, can help guide more targeted interventions and accommodations to optimize a patient’s level of functioning.

Oregon Health & Science University (OHSU)

Case example

A healthy, bright 6-year-old boy is referred by his family doctor to an academic medical center for a full team evaluation because of suspicion of ASD, after having already been diagnosed with ADHD at the age of 5. His difficulties with inattention, impulsivity, and hyperactivity, as well as his behavioral rigidities and sensory avoidant and sensory seeking behaviors have caused functional impairments for him in his kindergarten classroom. He has been penalized with removal of recess on more than one occasion. A low dose of a stimulant had been tried but resulted in a perceived increase in disruptive behaviors.

The boy, while hyperkinetic and often paying poor attention, is quite capable of high-quality and well-modulated eye contact paired with typical social referencing and reciprocity when actively engaging with the examiner and his parents. He does have a reported history of serial fixated interests and some repetitive behaviors but is also noted to be flexible in his interpersonal style, maintains other varied and typical interests, easily directs affect, utilizes a wide array of fluid gestures paired naturally with verbal communication, and shares enjoyment with smoothly coordinated gaze. He has mild articulation errors but uses pronouns appropriately and has no scripted speech or echolalia, though does engage in some whispered palilalia intermittently.

He is generally quite cooperative and redirectable when focused and has a completely normal physical and neurologic examination. During the visit, the doctor notices the boy making an intermittent honking sound, which parents report as an attention-seeking strategy during times of stress. Further physician-guided information gathering around other repetitive noises and movements elicits a history of engagement in repetitive hand-to-groin movements, some exaggerated blinking, and a number of other waxing and waning subtle motor and phonic tics with onset in preschool. These noises and movements have generally been identified as “fidgeting” and “misbehaving” by well-meaning caregivers in the home and school environments.

Both Tourette syndrome and ASD are more common in males, with stereotyped patterns of movements and behaviors; anxious, obsessive, and compulsive behaviors resulting in behavioral rigidities; sensory sensitivities; and increased rates of hyperkinesis with decreased impulse control which result in increased sensory-seeking behaviors. Diagnostic criteria for Tourette syndrome are met when a child has had multiple motor tics and at least one phonic tic present for at least 1 year, with tic-free intervals lasting no longer than 3 months, and with onset before the age of 18. Typically, tics emerge in late preschool and early grade school, and some children even develop repetitive movements as early as toddlerhood. Tics tend to worsen around the peripubertal era, then often generally improve in the teen years. Tic types, frequency, and severity general fluctuate over time.

Forty percent of children with Tourette syndrome also meet criteria for OCD, with many more having OCD traits, and about 65% of children with Tourette syndrome also meet criteria for ADHD, with many more having ADHD traits. OCD can lead to more rigid and directive social interactions in children as well as obsessive interests, just as ADHD can lead to less socially attuned and less cooperative behaviors, even in children who do not meet criteria for ASD.

For example, a child with OCD in the absence of ASD may still “police” other kids in class and be overly focused on the rules of a game, which may become a social liability. Likewise, a child with ADHD in the absence of ASD may be so distractible that focusing on what other kids are saying and their paired facial expressions is compromised, leading to poor-quality social reciprocity during interactions with peers. Given the remarkable overlap in shared symptoms, it is essential for pediatric providers to consider Tourette syndrome in the differential for any child with repetitive movements and behaviors in addition to ASD and a wide array of other neurodevelopment differences, including global developmental delays and intellectual disabilities. This is of particular importance as the diagnosis of Tourette syndrome can be used to gain access to developmental disability services if the condition has resulted in true adaptive impairments.

It is determined that the boy does in fact meet criteria for ADHD, but also for OCD and Tourette syndrome. Both his Autism Diagnostic Observation Schedule and DSM-5–influenced autism interview are found to be in the nonclinical ranges, given his quality of communication, social engagement, imaginative play, and varied interests. A diagnosis of ASD is not felt to be an appropriate conceptualization of his neurodevelopmental differences. He is started on a low dose of guanfacine, which induces a decline in tics, impulsivity, and hyperkinesis. He is given a 504 plan in school that includes scheduled “tic breaks,” sensory fidgets for use in the classroom, extra movement opportunities as needed, and utilization of a gentle cueing system between him and his teacher for low-key redirection of disruptive behaviors. He is no longer penalized for inattention or tics, and his 504 plan protects him from the use of recess removal as a behavioral modification strategy.

His parents enroll him in the community swim program for extra exercise, focus on decreasing screen time, and give him an earlier bedtime to help decrease his tics and rigidities, while improving his ability to self-regulate. Eventually, a low dose of a newer-generation stimulant is added to his guanfacine, with excellent results and only a mild increase in tolerable tics.

The child in the vignette did well with a 504 plan based on his medical diagnoses, though if related learning difficulties had persisted, eligibility under Other Health Impaired could be used to provide eligibility for an Individualized Education Plan. Alpha-agonists can be helpful for symptom control in those with Tourette syndrome by simultaneously treating tics, hyperkinesis, and impulsivity, while decreasing the risk of tic exacerbation with use of stimulants. Overall, understanding the neurodiversity related to Tourette syndrome can help providers advocate for home and community-based supports to optimize general functioning and quality of life.

Dr. Roth is a developmental and behavioral pediatrician in Eugene, Ore. She has no conflicts of interest.

References

Darrow S et al. J Am Acad Child Adolescent Psych. 2017;56(7):610-7.

AAP Section on Developmental and Behavioral Pediatrics. Developmental and Behavioral Pediatrics. Voigt RG et al, eds. 2018: American Academy of Pediatrics.

Babies born from the 37th week of pregnancy who are mild to moderately small for gestational age (SGA) could benefit from monitoring to check for developmental problems, a study suggested.

A team of researchers at Coventry (England) University found that birth weight below the 25th percentile was associated with more developmental concerns in early childhood than a weight between the 25th and 74th percentile.

Those difficulties were apparent at percentiles higher than the conventional threshold defining SGA, they noted.

Low and high extremes of birth weight have been associated with adverse pregnancy and neonatal health outcomes, but little is known about the effects on motor skills, socialization, language, and other developmental markers for the entire range of birth weights for nonpremature babies.
 

Study linked health databases to child assessment results

To find out more, researchers conducted a population-based cohort study of 686,284 singleton infants born from 37 weeks of gestation, linking pregnancy and birth records from health databases covering all of Scotland to child development assessments carried out between the ages of 2 and 3.5 years.

The researchers looked for associations between birth weight and early childhood developmental concerns, taking into account confounders, such as maternal age, the mother’s medical history during pregnancy, early pregnancy body mass index, deprivation, ethnicity, alcohol use, and smoking history.

The study, published in the open access journal PLOS Medicine, found that babies born below the 25th percentile for birth weight had a higher risk of developmental concerns, compared with babies born between the 25th and 74th percentiles, with the infants who had the lowest birth weight most at risk of later developmental difficulties.

Those born between the 10th and 24th percentile had a relative risk of 1.07 (95% confidence interval, 1.03-1.12; P < .001); between the 3rd and 9th percentile, the RR was 1.18 (95% CI, 1.12-1.25, P < .001), and below the 3rd percentile the RR was 1.37 (95% CI, 1.24-1.50; P < .001).

No substantial increase in the risk of early childhood developmental concerns was identified for larger birth weight categories in the 75th-89th percentile range, the researchers reported.
 

Monitoring and support

The researchers concluded that having mild to moderate SGA “is an unrecognized, potentially important contributor to the prevalence of developmental concerns.”

Before this study, babies below the 10th percentile were usually considered at risk for developmental concerns. However, the investigation found a greater number of babies within the 10th-24th percentile range of birth weights with these issues, simply because there were a larger number of babies within that population.

Abiodun Adanikin, MBBS, PhD, MPH, of Coventry University’s Centre for Healthcare Research, and study first author, said: “Though it is mostly unrecognized, babies who are mild to moderately small at birth are key contributors to the burden of childhood developmental concerns. They may need closer monitoring and increased support to reduce the risk of developmental concerns.”

The study also involved colleagues from the University of Bristol (England), the University of Glasgow, the University of Cambridge (England), and Queen Mary University of London.

This work was supported by a Wellbeing of Women Research Grant. One author has received research support from Roche Diagnostics, GSK, Illumina, and Sera Prognostics (fetal growth restriction, preeclampsia and preterm birth). He has been a paid consultant to GSK (preterm birth) and is a member of a Data Monitoring Committee for GSK trials of RSV vaccination in pregnancy. He is one of three named inventors on a patent application filed by Cambridge Enterprise for novel predictive test for fetal growth disorder. He is an academic editor on PLOS Medicine’s editorial board. The authors declare no other competing interest.

A version of this article first appeared on Medscape UK.

Babies born from the 37th week of pregnancy who are mild to moderately small for gestational age (SGA) could benefit from monitoring to check for developmental problems, a study suggested.

A team of researchers at Coventry (England) University found that birth weight below the 25th percentile was associated with more developmental concerns in early childhood than a weight between the 25th and 74th percentile.

Those difficulties were apparent at percentiles higher than the conventional threshold defining SGA, they noted.

Low and high extremes of birth weight have been associated with adverse pregnancy and neonatal health outcomes, but little is known about the effects on motor skills, socialization, language, and other developmental markers for the entire range of birth weights for nonpremature babies.
 

Study linked health databases to child assessment results

To find out more, researchers conducted a population-based cohort study of 686,284 singleton infants born from 37 weeks of gestation, linking pregnancy and birth records from health databases covering all of Scotland to child development assessments carried out between the ages of 2 and 3.5 years.

The researchers looked for associations between birth weight and early childhood developmental concerns, taking into account confounders, such as maternal age, the mother’s medical history during pregnancy, early pregnancy body mass index, deprivation, ethnicity, alcohol use, and smoking history.

The study, published in the open access journal PLOS Medicine, found that babies born below the 25th percentile for birth weight had a higher risk of developmental concerns, compared with babies born between the 25th and 74th percentiles, with the infants who had the lowest birth weight most at risk of later developmental difficulties.

Those born between the 10th and 24th percentile had a relative risk of 1.07 (95% confidence interval, 1.03-1.12; P < .001); between the 3rd and 9th percentile, the RR was 1.18 (95% CI, 1.12-1.25, P < .001), and below the 3rd percentile the RR was 1.37 (95% CI, 1.24-1.50; P < .001).

No substantial increase in the risk of early childhood developmental concerns was identified for larger birth weight categories in the 75th-89th percentile range, the researchers reported.
 

Monitoring and support

The researchers concluded that having mild to moderate SGA “is an unrecognized, potentially important contributor to the prevalence of developmental concerns.”

Before this study, babies below the 10th percentile were usually considered at risk for developmental concerns. However, the investigation found a greater number of babies within the 10th-24th percentile range of birth weights with these issues, simply because there were a larger number of babies within that population.

Abiodun Adanikin, MBBS, PhD, MPH, of Coventry University’s Centre for Healthcare Research, and study first author, said: “Though it is mostly unrecognized, babies who are mild to moderately small at birth are key contributors to the burden of childhood developmental concerns. They may need closer monitoring and increased support to reduce the risk of developmental concerns.”

The study also involved colleagues from the University of Bristol (England), the University of Glasgow, the University of Cambridge (England), and Queen Mary University of London.

This work was supported by a Wellbeing of Women Research Grant. One author has received research support from Roche Diagnostics, GSK, Illumina, and Sera Prognostics (fetal growth restriction, preeclampsia and preterm birth). He has been a paid consultant to GSK (preterm birth) and is a member of a Data Monitoring Committee for GSK trials of RSV vaccination in pregnancy. He is one of three named inventors on a patent application filed by Cambridge Enterprise for novel predictive test for fetal growth disorder. He is an academic editor on PLOS Medicine’s editorial board. The authors declare no other competing interest.

A version of this article first appeared on Medscape UK.

Babies born from the 37th week of pregnancy who are mild to moderately small for gestational age (SGA) could benefit from monitoring to check for developmental problems, a study suggested.

A team of researchers at Coventry (England) University found that birth weight below the 25th percentile was associated with more developmental concerns in early childhood than a weight between the 25th and 74th percentile.

Those difficulties were apparent at percentiles higher than the conventional threshold defining SGA, they noted.

Low and high extremes of birth weight have been associated with adverse pregnancy and neonatal health outcomes, but little is known about the effects on motor skills, socialization, language, and other developmental markers for the entire range of birth weights for nonpremature babies.
 

Study linked health databases to child assessment results

To find out more, researchers conducted a population-based cohort study of 686,284 singleton infants born from 37 weeks of gestation, linking pregnancy and birth records from health databases covering all of Scotland to child development assessments carried out between the ages of 2 and 3.5 years.

The researchers looked for associations between birth weight and early childhood developmental concerns, taking into account confounders, such as maternal age, the mother’s medical history during pregnancy, early pregnancy body mass index, deprivation, ethnicity, alcohol use, and smoking history.

The study, published in the open access journal PLOS Medicine, found that babies born below the 25th percentile for birth weight had a higher risk of developmental concerns, compared with babies born between the 25th and 74th percentiles, with the infants who had the lowest birth weight most at risk of later developmental difficulties.

Those born between the 10th and 24th percentile had a relative risk of 1.07 (95% confidence interval, 1.03-1.12; P < .001); between the 3rd and 9th percentile, the RR was 1.18 (95% CI, 1.12-1.25, P < .001), and below the 3rd percentile the RR was 1.37 (95% CI, 1.24-1.50; P < .001).

No substantial increase in the risk of early childhood developmental concerns was identified for larger birth weight categories in the 75th-89th percentile range, the researchers reported.
 

Monitoring and support

The researchers concluded that having mild to moderate SGA “is an unrecognized, potentially important contributor to the prevalence of developmental concerns.”

Before this study, babies below the 10th percentile were usually considered at risk for developmental concerns. However, the investigation found a greater number of babies within the 10th-24th percentile range of birth weights with these issues, simply because there were a larger number of babies within that population.

Abiodun Adanikin, MBBS, PhD, MPH, of Coventry University’s Centre for Healthcare Research, and study first author, said: “Though it is mostly unrecognized, babies who are mild to moderately small at birth are key contributors to the burden of childhood developmental concerns. They may need closer monitoring and increased support to reduce the risk of developmental concerns.”

The study also involved colleagues from the University of Bristol (England), the University of Glasgow, the University of Cambridge (England), and Queen Mary University of London.

This work was supported by a Wellbeing of Women Research Grant. One author has received research support from Roche Diagnostics, GSK, Illumina, and Sera Prognostics (fetal growth restriction, preeclampsia and preterm birth). He has been a paid consultant to GSK (preterm birth) and is a member of a Data Monitoring Committee for GSK trials of RSV vaccination in pregnancy. He is one of three named inventors on a patent application filed by Cambridge Enterprise for novel predictive test for fetal growth disorder. He is an academic editor on PLOS Medicine’s editorial board. The authors declare no other competing interest.

A version of this article first appeared on Medscape UK.

Black and Hispanic adults with spina bifida or cerebral palsy are less likely to attend wellness visits than are White adults with the same pediatric-onset disabilities, a new study finds.

Black adults also had lower odds of having a bone density screening, compared with White adults. Plus, comorbidities were highest among the Black patients, according to the paper, which was published in Annals of Family Medicine.

Elham Mahmoudi, PhD, and her coauthors examined private insurance claims from 11,635 patients with cerebral palsy (CP) or spina bifida over ten years from 2007 to 2017. The researchers analyzed comorbidities and compared the rates of different psychological, cardiometabolic, and musculoskeletal conditions among these patients.

Only 23% of Hispanic participants and 18% of Black participants attended an annual wellness visit, compared with 32% of the White participants.

Only 1% of Black and 2% of White participants received any bone density screening (odds ratio = 0.54, 95% confidence interval [CI], 0.31-0.95), a service that is essential for catching a patient’s potential risk for osteoporosis and fractures.

According to the researchers, patients accessed services such as bone density scans, cholesterol assessments, diabetes screenings, and annual wellness visits less than recommended for people with those chronic conditions.

“People with spina bifida and cerebral palsy have complex care needs. We know through our work that chronic conditions are much higher among them compared with adults without disabilities,” Dr. Mahmoudi, associate professor in the department of family medicine at University of Michigan, Ann Arbor, said in an interview. “I was surprised to see even with private insurance, the rate of using preventative services is so low among White people and minority populations.”
 

Comorbidities highest in Black participants

Black adults had the highest comorbidity score of 2.5, and Hispanic adults had the lowest comorbidity score of 1.8. For White adults in the study, the comorbidity score was 2.0.

Osteoporosis, a common concern for people with spina bifida or cerebral palsy, was detected in around 4% of all participants. Osteoarthritis was detected in 13.38% of Black participants, versus 8.53% of Hispanic participants and 11.09% of White participants.

Diabetes and hypertension were more common among Black participants than among Hispanic and White participants. The percentages of Black patients with hypertension and diabetes were 16.5% and 39.89%, respectively. Among the Hispanic and White adults, the percentages with hypertension were 22.3% and 28.2%, respectively, according to the paper.
 

Disparities in access

Jamil Paden, racial and health equity manager at the Christopher and Dana Reeve Foundation, said getting access to literature, transportation, tables, chairs, weigh scales, and imaging equipment that accommodate the needs of people with disabilities are some of the biggest challenges for people with disabilities who are trying to receive care.

“It’s not a one size fits all, we have to recognize that if someone doesn’t see themselves in a particular place, then it makes it more challenging for them to feel comfortable speaking up and saying things about their health, which would prevent a person from saying something early on,” Mr. Paden said in an interview. “That particular issue will continue to grow and become more of a health risk, or health challenge down the line.”

Mr. Paden emphasized intersections between class, race, and circumstances which can, together, make health care less equitable for people with disabilities, especially in underserved communities and communities of color. He urged health care providers to distance their practices from a “one size fits all” approach to treatment and engage in their patients’ individual lives and communities.

“It’s not enough to just say, Hey, you have a disability. So let me treat your disability ... You have to recognize that although a patient may have a dire diagnosis, they also are a person of color, and they have to navigate different aspects of life from their counterparts,” he said.

Dr. Mahmoudi said patient and provider understanding of the disability is often lacking. She recommended advocating for patients, noting that giving both patients and providers the tools to further educate themselves and apply that to their regular visits is a good first step.

“Just having access to a facility doesn’t mean they will get the services they need. Preventative services that are recommended for people with disabilities differ from the general population. Providers should be educated about that and the patient needs to be educated about that,” she added.

“Patients who do not approach clinicians get lost in the system. Maybe many facilities are not disability friendly, or they need health literacy. If they don’t know they are at risk for osteoporosis, for example, then they won’t ask,” Dr. Mahmoudi said.

The study was funded by The National Institute on Disability, Independent Living, and Rehabilitation Research. Dr. Mahmoudi and Mr. Paden report no relevant financial relationships.

Black and Hispanic adults with spina bifida or cerebral palsy are less likely to attend wellness visits than are White adults with the same pediatric-onset disabilities, a new study finds.

Black adults also had lower odds of having a bone density screening, compared with White adults. Plus, comorbidities were highest among the Black patients, according to the paper, which was published in Annals of Family Medicine.

Elham Mahmoudi, PhD, and her coauthors examined private insurance claims from 11,635 patients with cerebral palsy (CP) or spina bifida over ten years from 2007 to 2017. The researchers analyzed comorbidities and compared the rates of different psychological, cardiometabolic, and musculoskeletal conditions among these patients.

Only 23% of Hispanic participants and 18% of Black participants attended an annual wellness visit, compared with 32% of the White participants.

Only 1% of Black and 2% of White participants received any bone density screening (odds ratio = 0.54, 95% confidence interval [CI], 0.31-0.95), a service that is essential for catching a patient’s potential risk for osteoporosis and fractures.

According to the researchers, patients accessed services such as bone density scans, cholesterol assessments, diabetes screenings, and annual wellness visits less than recommended for people with those chronic conditions.

“People with spina bifida and cerebral palsy have complex care needs. We know through our work that chronic conditions are much higher among them compared with adults without disabilities,” Dr. Mahmoudi, associate professor in the department of family medicine at University of Michigan, Ann Arbor, said in an interview. “I was surprised to see even with private insurance, the rate of using preventative services is so low among White people and minority populations.”
 

Comorbidities highest in Black participants

Black adults had the highest comorbidity score of 2.5, and Hispanic adults had the lowest comorbidity score of 1.8. For White adults in the study, the comorbidity score was 2.0.

Osteoporosis, a common concern for people with spina bifida or cerebral palsy, was detected in around 4% of all participants. Osteoarthritis was detected in 13.38% of Black participants, versus 8.53% of Hispanic participants and 11.09% of White participants.

Diabetes and hypertension were more common among Black participants than among Hispanic and White participants. The percentages of Black patients with hypertension and diabetes were 16.5% and 39.89%, respectively. Among the Hispanic and White adults, the percentages with hypertension were 22.3% and 28.2%, respectively, according to the paper.
 

Disparities in access

Jamil Paden, racial and health equity manager at the Christopher and Dana Reeve Foundation, said getting access to literature, transportation, tables, chairs, weigh scales, and imaging equipment that accommodate the needs of people with disabilities are some of the biggest challenges for people with disabilities who are trying to receive care.

“It’s not a one size fits all, we have to recognize that if someone doesn’t see themselves in a particular place, then it makes it more challenging for them to feel comfortable speaking up and saying things about their health, which would prevent a person from saying something early on,” Mr. Paden said in an interview. “That particular issue will continue to grow and become more of a health risk, or health challenge down the line.”

Mr. Paden emphasized intersections between class, race, and circumstances which can, together, make health care less equitable for people with disabilities, especially in underserved communities and communities of color. He urged health care providers to distance their practices from a “one size fits all” approach to treatment and engage in their patients’ individual lives and communities.

“It’s not enough to just say, Hey, you have a disability. So let me treat your disability ... You have to recognize that although a patient may have a dire diagnosis, they also are a person of color, and they have to navigate different aspects of life from their counterparts,” he said.

Dr. Mahmoudi said patient and provider understanding of the disability is often lacking. She recommended advocating for patients, noting that giving both patients and providers the tools to further educate themselves and apply that to their regular visits is a good first step.

“Just having access to a facility doesn’t mean they will get the services they need. Preventative services that are recommended for people with disabilities differ from the general population. Providers should be educated about that and the patient needs to be educated about that,” she added.

“Patients who do not approach clinicians get lost in the system. Maybe many facilities are not disability friendly, or they need health literacy. If they don’t know they are at risk for osteoporosis, for example, then they won’t ask,” Dr. Mahmoudi said.

The study was funded by The National Institute on Disability, Independent Living, and Rehabilitation Research. Dr. Mahmoudi and Mr. Paden report no relevant financial relationships.

Black and Hispanic adults with spina bifida or cerebral palsy are less likely to attend wellness visits than are White adults with the same pediatric-onset disabilities, a new study finds.

Black adults also had lower odds of having a bone density screening, compared with White adults. Plus, comorbidities were highest among the Black patients, according to the paper, which was published in Annals of Family Medicine.

Elham Mahmoudi, PhD, and her coauthors examined private insurance claims from 11,635 patients with cerebral palsy (CP) or spina bifida over ten years from 2007 to 2017. The researchers analyzed comorbidities and compared the rates of different psychological, cardiometabolic, and musculoskeletal conditions among these patients.

Only 23% of Hispanic participants and 18% of Black participants attended an annual wellness visit, compared with 32% of the White participants.

Only 1% of Black and 2% of White participants received any bone density screening (odds ratio = 0.54, 95% confidence interval [CI], 0.31-0.95), a service that is essential for catching a patient’s potential risk for osteoporosis and fractures.

According to the researchers, patients accessed services such as bone density scans, cholesterol assessments, diabetes screenings, and annual wellness visits less than recommended for people with those chronic conditions.

“People with spina bifida and cerebral palsy have complex care needs. We know through our work that chronic conditions are much higher among them compared with adults without disabilities,” Dr. Mahmoudi, associate professor in the department of family medicine at University of Michigan, Ann Arbor, said in an interview. “I was surprised to see even with private insurance, the rate of using preventative services is so low among White people and minority populations.”
 

Comorbidities highest in Black participants

Black adults had the highest comorbidity score of 2.5, and Hispanic adults had the lowest comorbidity score of 1.8. For White adults in the study, the comorbidity score was 2.0.

Osteoporosis, a common concern for people with spina bifida or cerebral palsy, was detected in around 4% of all participants. Osteoarthritis was detected in 13.38% of Black participants, versus 8.53% of Hispanic participants and 11.09% of White participants.

Diabetes and hypertension were more common among Black participants than among Hispanic and White participants. The percentages of Black patients with hypertension and diabetes were 16.5% and 39.89%, respectively. Among the Hispanic and White adults, the percentages with hypertension were 22.3% and 28.2%, respectively, according to the paper.
 

Disparities in access

Jamil Paden, racial and health equity manager at the Christopher and Dana Reeve Foundation, said getting access to literature, transportation, tables, chairs, weigh scales, and imaging equipment that accommodate the needs of people with disabilities are some of the biggest challenges for people with disabilities who are trying to receive care.

“It’s not a one size fits all, we have to recognize that if someone doesn’t see themselves in a particular place, then it makes it more challenging for them to feel comfortable speaking up and saying things about their health, which would prevent a person from saying something early on,” Mr. Paden said in an interview. “That particular issue will continue to grow and become more of a health risk, or health challenge down the line.”

Mr. Paden emphasized intersections between class, race, and circumstances which can, together, make health care less equitable for people with disabilities, especially in underserved communities and communities of color. He urged health care providers to distance their practices from a “one size fits all” approach to treatment and engage in their patients’ individual lives and communities.

“It’s not enough to just say, Hey, you have a disability. So let me treat your disability ... You have to recognize that although a patient may have a dire diagnosis, they also are a person of color, and they have to navigate different aspects of life from their counterparts,” he said.

Dr. Mahmoudi said patient and provider understanding of the disability is often lacking. She recommended advocating for patients, noting that giving both patients and providers the tools to further educate themselves and apply that to their regular visits is a good first step.

“Just having access to a facility doesn’t mean they will get the services they need. Preventative services that are recommended for people with disabilities differ from the general population. Providers should be educated about that and the patient needs to be educated about that,” she added.

“Patients who do not approach clinicians get lost in the system. Maybe many facilities are not disability friendly, or they need health literacy. If they don’t know they are at risk for osteoporosis, for example, then they won’t ask,” Dr. Mahmoudi said.

The study was funded by The National Institute on Disability, Independent Living, and Rehabilitation Research. Dr. Mahmoudi and Mr. Paden report no relevant financial relationships.

Developmental language disorder (DLD) is characterized by receptive or expressive language difficulties or both. Children with the neurodevelopmental condition “struggle to comprehend and use their native language for no obvious reason,” said the authors of a new study. This leads to problems with grammar, vocabulary, and holding conversations, and in turn an increased risk of “difficulties when learning to read, underachieving academically, being unemployed, and facing social and mental health challenges.”

The condition is common and estimated to affect 7% of children – approximately two in every classroom – but is “underrecognized” said the authors.

Saloni Krishnan, PhD, reader at Royal Holloway, University of London, who led the study as a research fellow at the University of Oxford, England, explained: “DLD is a relatively unknown and understudied condition, unlike better known neurodevelopmental conditions such as ADHD, dyslexia, or autism.”

It is suspected that children with DLD may have differences in areas of the brain involved with learning habits and rules. “Although we know that DLD does not result from gross neural lesions, we still do not have a clear picture of how brain anatomy differs in children with DLD,” the authors highlighted.
 

Language learning difficulties linked to brain differences

For their study, published in eLife, researchers used an MRI technique called multiparameter mapping (MPM) to investigate microstructural neural differences in children with DLD. The technique measures the properties of brain tissue and is particularly useful for measuring the amounts of myelin.

“Understanding the neural basis of DLD is particularly challenging given the developmental nature of the disorder, as well as the lack of animal models for understanding language,” explained the authors. However, they pointed out that MPM allows an “unparalleled in vivo method” to investigate microstructural neural changes in children with DLD.

Kate Watkins, PhD, professor of cognitive neuroscience at the University of Oxford and senior author, said: “This type of scan tells us more about the makeup or composition of the brain tissue in different areas.”

As part of the Oxford Brain Organisation in Language Development (OxBOLD) study, the researchers recruited and tested 175 children between the ages of 10 and 15 years. Subsequently, 56 children with typical language development and 33 children with DLD were scanned using MPM.

The researchers compared the two groups and found that children with DLD have less myelin in parts of the brain responsible for speaking, listening, and learning rules and habits.

Specifically, maps of magnetization transfer saturation (MTsat) – which index myelin – in children with DLD showed reductions in MTsat values in the caudate nucleus bilaterally, and in the left ventral sensorimotor cortex and Heschl’s gyrus.

“Our findings using this protocol suggest that the caudate nucleus, as well as regions in the wider speech and language network, show alterations in myelin in children with DLD,” explained the authors.

“Given myelin’s role in enabling fast and reliable communication in the brain, reduced myelin content may explain why children with DLD struggle with speech and language processing,” they highlighted.
 

Significant advance in DLD understanding

The study findings established changes in striatal and cortical myelin as a “neural basis for DLD,” explained the journal editor, who highlighted that this was a “significant advance” in the understanding of DLD. “These brain differences may explain the poorer language outcomes in this group,” the authors said.

The findings “strongly point” to a role for the striatum in the development of DLD, and this role is likely to be in the “learning of habits and sequences,” the authors said.

They pointed out, however, that myelin patterns can change over development, and that myelination can be observed after successful training. “It is important to assess whether these differences in myelin persist over development in DLD, and if they can be targeted through training using behavioral interventions,” they emphasized.

Professor Watkins commented: “The findings might help us understand the pathways involved at a biological level and ultimately allow us to explain why children with DLD have problems with language learning.”

A spokesperson for the RADLD (Raising Awareness of Developmental Language Disorder) organization, commented: “Developmental language disorder has long been understood to have a neurological basis; however, these differences in the brain development have received limited attention in research.” It added that utilizing new technology helps to better understand the “potential neurological differences” experienced by people with DLD.

More studies are needed to determine if these brain differences cause language problems and how or if experiencing language difficulties could cause these changes in the brain, explained the authors. They hoped that further research may help scientists find new treatments that target these brain differences.

Funding was provided by UK Research and Innovation, Wellcome Trust. The authors declared no competing interests.

A version of this article first appeared on MedscapeUK.

Developmental language disorder (DLD) is characterized by receptive or expressive language difficulties or both. Children with the neurodevelopmental condition “struggle to comprehend and use their native language for no obvious reason,” said the authors of a new study. This leads to problems with grammar, vocabulary, and holding conversations, and in turn an increased risk of “difficulties when learning to read, underachieving academically, being unemployed, and facing social and mental health challenges.”

The condition is common and estimated to affect 7% of children – approximately two in every classroom – but is “underrecognized” said the authors.

Saloni Krishnan, PhD, reader at Royal Holloway, University of London, who led the study as a research fellow at the University of Oxford, England, explained: “DLD is a relatively unknown and understudied condition, unlike better known neurodevelopmental conditions such as ADHD, dyslexia, or autism.”

It is suspected that children with DLD may have differences in areas of the brain involved with learning habits and rules. “Although we know that DLD does not result from gross neural lesions, we still do not have a clear picture of how brain anatomy differs in children with DLD,” the authors highlighted.
 

Language learning difficulties linked to brain differences

For their study, published in eLife, researchers used an MRI technique called multiparameter mapping (MPM) to investigate microstructural neural differences in children with DLD. The technique measures the properties of brain tissue and is particularly useful for measuring the amounts of myelin.

“Understanding the neural basis of DLD is particularly challenging given the developmental nature of the disorder, as well as the lack of animal models for understanding language,” explained the authors. However, they pointed out that MPM allows an “unparalleled in vivo method” to investigate microstructural neural changes in children with DLD.

Kate Watkins, PhD, professor of cognitive neuroscience at the University of Oxford and senior author, said: “This type of scan tells us more about the makeup or composition of the brain tissue in different areas.”

As part of the Oxford Brain Organisation in Language Development (OxBOLD) study, the researchers recruited and tested 175 children between the ages of 10 and 15 years. Subsequently, 56 children with typical language development and 33 children with DLD were scanned using MPM.

The researchers compared the two groups and found that children with DLD have less myelin in parts of the brain responsible for speaking, listening, and learning rules and habits.

Specifically, maps of magnetization transfer saturation (MTsat) – which index myelin – in children with DLD showed reductions in MTsat values in the caudate nucleus bilaterally, and in the left ventral sensorimotor cortex and Heschl’s gyrus.

“Our findings using this protocol suggest that the caudate nucleus, as well as regions in the wider speech and language network, show alterations in myelin in children with DLD,” explained the authors.

“Given myelin’s role in enabling fast and reliable communication in the brain, reduced myelin content may explain why children with DLD struggle with speech and language processing,” they highlighted.
 

Significant advance in DLD understanding

The study findings established changes in striatal and cortical myelin as a “neural basis for DLD,” explained the journal editor, who highlighted that this was a “significant advance” in the understanding of DLD. “These brain differences may explain the poorer language outcomes in this group,” the authors said.

The findings “strongly point” to a role for the striatum in the development of DLD, and this role is likely to be in the “learning of habits and sequences,” the authors said.

They pointed out, however, that myelin patterns can change over development, and that myelination can be observed after successful training. “It is important to assess whether these differences in myelin persist over development in DLD, and if they can be targeted through training using behavioral interventions,” they emphasized.

Professor Watkins commented: “The findings might help us understand the pathways involved at a biological level and ultimately allow us to explain why children with DLD have problems with language learning.”

A spokesperson for the RADLD (Raising Awareness of Developmental Language Disorder) organization, commented: “Developmental language disorder has long been understood to have a neurological basis; however, these differences in the brain development have received limited attention in research.” It added that utilizing new technology helps to better understand the “potential neurological differences” experienced by people with DLD.

More studies are needed to determine if these brain differences cause language problems and how or if experiencing language difficulties could cause these changes in the brain, explained the authors. They hoped that further research may help scientists find new treatments that target these brain differences.

Funding was provided by UK Research and Innovation, Wellcome Trust. The authors declared no competing interests.

A version of this article first appeared on MedscapeUK.

Developmental language disorder (DLD) is characterized by receptive or expressive language difficulties or both. Children with the neurodevelopmental condition “struggle to comprehend and use their native language for no obvious reason,” said the authors of a new study. This leads to problems with grammar, vocabulary, and holding conversations, and in turn an increased risk of “difficulties when learning to read, underachieving academically, being unemployed, and facing social and mental health challenges.”

The condition is common and estimated to affect 7% of children – approximately two in every classroom – but is “underrecognized” said the authors.

Saloni Krishnan, PhD, reader at Royal Holloway, University of London, who led the study as a research fellow at the University of Oxford, England, explained: “DLD is a relatively unknown and understudied condition, unlike better known neurodevelopmental conditions such as ADHD, dyslexia, or autism.”

It is suspected that children with DLD may have differences in areas of the brain involved with learning habits and rules. “Although we know that DLD does not result from gross neural lesions, we still do not have a clear picture of how brain anatomy differs in children with DLD,” the authors highlighted.
 

Language learning difficulties linked to brain differences

For their study, published in eLife, researchers used an MRI technique called multiparameter mapping (MPM) to investigate microstructural neural differences in children with DLD. The technique measures the properties of brain tissue and is particularly useful for measuring the amounts of myelin.

“Understanding the neural basis of DLD is particularly challenging given the developmental nature of the disorder, as well as the lack of animal models for understanding language,” explained the authors. However, they pointed out that MPM allows an “unparalleled in vivo method” to investigate microstructural neural changes in children with DLD.

Kate Watkins, PhD, professor of cognitive neuroscience at the University of Oxford and senior author, said: “This type of scan tells us more about the makeup or composition of the brain tissue in different areas.”

As part of the Oxford Brain Organisation in Language Development (OxBOLD) study, the researchers recruited and tested 175 children between the ages of 10 and 15 years. Subsequently, 56 children with typical language development and 33 children with DLD were scanned using MPM.

The researchers compared the two groups and found that children with DLD have less myelin in parts of the brain responsible for speaking, listening, and learning rules and habits.

Specifically, maps of magnetization transfer saturation (MTsat) – which index myelin – in children with DLD showed reductions in MTsat values in the caudate nucleus bilaterally, and in the left ventral sensorimotor cortex and Heschl’s gyrus.

“Our findings using this protocol suggest that the caudate nucleus, as well as regions in the wider speech and language network, show alterations in myelin in children with DLD,” explained the authors.

“Given myelin’s role in enabling fast and reliable communication in the brain, reduced myelin content may explain why children with DLD struggle with speech and language processing,” they highlighted.
 

Significant advance in DLD understanding

The study findings established changes in striatal and cortical myelin as a “neural basis for DLD,” explained the journal editor, who highlighted that this was a “significant advance” in the understanding of DLD. “These brain differences may explain the poorer language outcomes in this group,” the authors said.

The findings “strongly point” to a role for the striatum in the development of DLD, and this role is likely to be in the “learning of habits and sequences,” the authors said.

They pointed out, however, that myelin patterns can change over development, and that myelination can be observed after successful training. “It is important to assess whether these differences in myelin persist over development in DLD, and if they can be targeted through training using behavioral interventions,” they emphasized.

Professor Watkins commented: “The findings might help us understand the pathways involved at a biological level and ultimately allow us to explain why children with DLD have problems with language learning.”

A spokesperson for the RADLD (Raising Awareness of Developmental Language Disorder) organization, commented: “Developmental language disorder has long been understood to have a neurological basis; however, these differences in the brain development have received limited attention in research.” It added that utilizing new technology helps to better understand the “potential neurological differences” experienced by people with DLD.

More studies are needed to determine if these brain differences cause language problems and how or if experiencing language difficulties could cause these changes in the brain, explained the authors. They hoped that further research may help scientists find new treatments that target these brain differences.

Funding was provided by UK Research and Innovation, Wellcome Trust. The authors declared no competing interests.

A version of this article first appeared on MedscapeUK.

A new study has called into question the decades-long official guidance advising pregnant women to limit consumption of certain fish because of their potentially high mercury content. That advice was based particularly on one 1997 study suggesting a correlation between fetal exposure to methylmercury and cognitive dysfunction at age 7.

The U.K’s National Health Service currently advises not only pregnant women but also all those who are potentially fertile (those “who are planning a pregnancy or may have a child one day”) to limit oily fish consumption to no more than two portions per week. During pregnancy and while trying to get pregnant, women are advised to avoid shark, swordfish, and marlin altogether.
 

Suspicions arose from study involving consumption of pilot whale

However, researchers from the University of Bristol (England) now suggest that assumptions generated by the original 1997 study – of a cohort of women in the Faroe Islands – were unwarranted. “It was clearly stated that the methylmercury levels were associated with consumption of pilot whale (a sea mammal, not a fish),” they said.

The pilot whale is a species known to concentrate cadmium and mercury, and indeed in 1989 Faroe Islanders themselves had been advised to limit consumption of both whale meat and blubber, and to abstain completely from liver and kidneys.

Yet, as the authors pointed out, following the 1997 study, “the subsequent assumptions were that seafood in general was responsible for increased mercury levels in the mother.”
 

New study shows ‘no evidence of harm’

Their new research, published in NeuroToxicology, has now shown that “there is no evidence of harm from these fish,” they said. They recommend that advice for pregnant women should now be revised.

The study drew together analyses on over 4,131 pregnant mothers from the Avon Longitudinal Study of Parents and Children (ALSPAC), also known as the ‘Children of the 90s’ study, with similar detailed studies conducted in the Seychelles. The two populations differ considerably in their frequency of fish consumption: fish is a major component of the diet in the Seychelles, but eaten less frequently in the Avon study area, centered on Bristol.

The team looked for studies using the data from these two contrasting cohorts where mercury levels had been measured during pregnancy and the children followed up at frequent intervals during their childhood. Longitudinal studies in the Seychelles “have not demonstrated harmful cognitive effects in children with increasing maternal mercury levels”, they reported.

The same proved true in the United Kingdom, a more-developed country where fish is eaten less frequently, they found. They summarized the results from various papers that used ALSPAC data and found no adverse associations between total mercury levels measured in maternal whole blood and umbilical cord tissue with children’s cognitive development, in terms of either IQ or scholastic abilities.

In addition, extensive dietary questionnaires during pregnancy had allowed estimates of total fish intake to be calculated, as well as variations in the amount of each type of seafood consumed. “Although seafood is a source of dietary mercury, it appeared to explain a relatively small proportion (9%) of the variation in total blood mercury in our U.K. study population,” they said – actually less than the variance attributable to socio-demographic characteristics of the mother (10.4%).
 

Positive benefits of eating fish irrespective of type

What mattered was not which types of fish were eaten but whether the woman ate fish or not, which emerged as the most important factor. The mother’s prenatal mercury level was positively associated with her child’s IQ if she had eaten fish in pregnancy, but not if she had not.

“Significantly beneficial associations with prenatal mercury levels were shown for total and performance IQ, mathematical/scientific reasoning, and birth weight, in fish-consuming versus non–fish-consuming mothers,” the authors said. “These beneficial findings are similar to those observed in the Seychelles, where fish consumption is high and prenatal mercury levels are 10 times higher than U.S. levels.”

Caroline Taylor, PhD, senior research fellow and coauthor of the study, said: “We found that the mother’s mercury level during pregnancy is likely to have no adverse effect on the development of the child provided that the mother eats fish. If she did not eat fish, then there was some evidence that her mercury level could have a harmful effect on the child.”

The team said that this was because the essential nutrients in the fish could be protective against the mercury content of the fish. “This could be because of the benefits from the mix of essential nutrients that fish provides, including long-chain fatty acids, iodine, vitamin D and selenium,” said Dr. Taylor.
 

Women stopped eating any fish ‘to be on the safe side’

The authors called for a change in official guidance. “Health advice to pregnant women concerning consumption of mercury-containing foods has resulted in anxiety, with subsequent avoidance of fish consumption during pregnancy.” Seafood contains many nutrients crucial for children’s growth and development, but “there is the possibility that some women will stop eating any fish ‘to be on the safe side.’ ”

The authors said: “Although advice to pregnant women was generally that fish was good, the accompanying caveat was to avoid fish with high levels of mercury. Psychologically, the latter was the message that women remembered, and the general reaction has been for women to reduce their intake of all seafood.”

Coauthor Jean Golding, emeritus professor of pediatric and perinatal epidemiology at the University of Bristol, said: “It is important that advisories from health professionals revise their advice warning against eating certain species of fish. There is no evidence of harm from these fish, but there is evidence from different countries that such advice can cause confusion in pregnant women. The guidance for pregnancy should highlight ‘Eat at least two portions of fish a week, one of which should be oily’ – and omit all warnings that certain fish should not be eaten.”

The study was funded via core support for ALSPAC by the UK Medical Research Council and the UK Wellcome Trust.

A version of this article first appeared on Medscape UK.

A new study has called into question the decades-long official guidance advising pregnant women to limit consumption of certain fish because of their potentially high mercury content. That advice was based particularly on one 1997 study suggesting a correlation between fetal exposure to methylmercury and cognitive dysfunction at age 7.

The U.K’s National Health Service currently advises not only pregnant women but also all those who are potentially fertile (those “who are planning a pregnancy or may have a child one day”) to limit oily fish consumption to no more than two portions per week. During pregnancy and while trying to get pregnant, women are advised to avoid shark, swordfish, and marlin altogether.
 

Suspicions arose from study involving consumption of pilot whale

However, researchers from the University of Bristol (England) now suggest that assumptions generated by the original 1997 study – of a cohort of women in the Faroe Islands – were unwarranted. “It was clearly stated that the methylmercury levels were associated with consumption of pilot whale (a sea mammal, not a fish),” they said.

The pilot whale is a species known to concentrate cadmium and mercury, and indeed in 1989 Faroe Islanders themselves had been advised to limit consumption of both whale meat and blubber, and to abstain completely from liver and kidneys.

Yet, as the authors pointed out, following the 1997 study, “the subsequent assumptions were that seafood in general was responsible for increased mercury levels in the mother.”
 

New study shows ‘no evidence of harm’

Their new research, published in NeuroToxicology, has now shown that “there is no evidence of harm from these fish,” they said. They recommend that advice for pregnant women should now be revised.

The study drew together analyses on over 4,131 pregnant mothers from the Avon Longitudinal Study of Parents and Children (ALSPAC), also known as the ‘Children of the 90s’ study, with similar detailed studies conducted in the Seychelles. The two populations differ considerably in their frequency of fish consumption: fish is a major component of the diet in the Seychelles, but eaten less frequently in the Avon study area, centered on Bristol.

The team looked for studies using the data from these two contrasting cohorts where mercury levels had been measured during pregnancy and the children followed up at frequent intervals during their childhood. Longitudinal studies in the Seychelles “have not demonstrated harmful cognitive effects in children with increasing maternal mercury levels”, they reported.

The same proved true in the United Kingdom, a more-developed country where fish is eaten less frequently, they found. They summarized the results from various papers that used ALSPAC data and found no adverse associations between total mercury levels measured in maternal whole blood and umbilical cord tissue with children’s cognitive development, in terms of either IQ or scholastic abilities.

In addition, extensive dietary questionnaires during pregnancy had allowed estimates of total fish intake to be calculated, as well as variations in the amount of each type of seafood consumed. “Although seafood is a source of dietary mercury, it appeared to explain a relatively small proportion (9%) of the variation in total blood mercury in our U.K. study population,” they said – actually less than the variance attributable to socio-demographic characteristics of the mother (10.4%).
 

Positive benefits of eating fish irrespective of type

What mattered was not which types of fish were eaten but whether the woman ate fish or not, which emerged as the most important factor. The mother’s prenatal mercury level was positively associated with her child’s IQ if she had eaten fish in pregnancy, but not if she had not.

“Significantly beneficial associations with prenatal mercury levels were shown for total and performance IQ, mathematical/scientific reasoning, and birth weight, in fish-consuming versus non–fish-consuming mothers,” the authors said. “These beneficial findings are similar to those observed in the Seychelles, where fish consumption is high and prenatal mercury levels are 10 times higher than U.S. levels.”

Caroline Taylor, PhD, senior research fellow and coauthor of the study, said: “We found that the mother’s mercury level during pregnancy is likely to have no adverse effect on the development of the child provided that the mother eats fish. If she did not eat fish, then there was some evidence that her mercury level could have a harmful effect on the child.”

The team said that this was because the essential nutrients in the fish could be protective against the mercury content of the fish. “This could be because of the benefits from the mix of essential nutrients that fish provides, including long-chain fatty acids, iodine, vitamin D and selenium,” said Dr. Taylor.
 

Women stopped eating any fish ‘to be on the safe side’

The authors called for a change in official guidance. “Health advice to pregnant women concerning consumption of mercury-containing foods has resulted in anxiety, with subsequent avoidance of fish consumption during pregnancy.” Seafood contains many nutrients crucial for children’s growth and development, but “there is the possibility that some women will stop eating any fish ‘to be on the safe side.’ ”

The authors said: “Although advice to pregnant women was generally that fish was good, the accompanying caveat was to avoid fish with high levels of mercury. Psychologically, the latter was the message that women remembered, and the general reaction has been for women to reduce their intake of all seafood.”

Coauthor Jean Golding, emeritus professor of pediatric and perinatal epidemiology at the University of Bristol, said: “It is important that advisories from health professionals revise their advice warning against eating certain species of fish. There is no evidence of harm from these fish, but there is evidence from different countries that such advice can cause confusion in pregnant women. The guidance for pregnancy should highlight ‘Eat at least two portions of fish a week, one of which should be oily’ – and omit all warnings that certain fish should not be eaten.”

The study was funded via core support for ALSPAC by the UK Medical Research Council and the UK Wellcome Trust.

A version of this article first appeared on Medscape UK.

A new study has called into question the decades-long official guidance advising pregnant women to limit consumption of certain fish because of their potentially high mercury content. That advice was based particularly on one 1997 study suggesting a correlation between fetal exposure to methylmercury and cognitive dysfunction at age 7.

The U.K’s National Health Service currently advises not only pregnant women but also all those who are potentially fertile (those “who are planning a pregnancy or may have a child one day”) to limit oily fish consumption to no more than two portions per week. During pregnancy and while trying to get pregnant, women are advised to avoid shark, swordfish, and marlin altogether.
 

Suspicions arose from study involving consumption of pilot whale

However, researchers from the University of Bristol (England) now suggest that assumptions generated by the original 1997 study – of a cohort of women in the Faroe Islands – were unwarranted. “It was clearly stated that the methylmercury levels were associated with consumption of pilot whale (a sea mammal, not a fish),” they said.

The pilot whale is a species known to concentrate cadmium and mercury, and indeed in 1989 Faroe Islanders themselves had been advised to limit consumption of both whale meat and blubber, and to abstain completely from liver and kidneys.

Yet, as the authors pointed out, following the 1997 study, “the subsequent assumptions were that seafood in general was responsible for increased mercury levels in the mother.”
 

New study shows ‘no evidence of harm’

Their new research, published in NeuroToxicology, has now shown that “there is no evidence of harm from these fish,” they said. They recommend that advice for pregnant women should now be revised.

The study drew together analyses on over 4,131 pregnant mothers from the Avon Longitudinal Study of Parents and Children (ALSPAC), also known as the ‘Children of the 90s’ study, with similar detailed studies conducted in the Seychelles. The two populations differ considerably in their frequency of fish consumption: fish is a major component of the diet in the Seychelles, but eaten less frequently in the Avon study area, centered on Bristol.

The team looked for studies using the data from these two contrasting cohorts where mercury levels had been measured during pregnancy and the children followed up at frequent intervals during their childhood. Longitudinal studies in the Seychelles “have not demonstrated harmful cognitive effects in children with increasing maternal mercury levels”, they reported.

The same proved true in the United Kingdom, a more-developed country where fish is eaten less frequently, they found. They summarized the results from various papers that used ALSPAC data and found no adverse associations between total mercury levels measured in maternal whole blood and umbilical cord tissue with children’s cognitive development, in terms of either IQ or scholastic abilities.

In addition, extensive dietary questionnaires during pregnancy had allowed estimates of total fish intake to be calculated, as well as variations in the amount of each type of seafood consumed. “Although seafood is a source of dietary mercury, it appeared to explain a relatively small proportion (9%) of the variation in total blood mercury in our U.K. study population,” they said – actually less than the variance attributable to socio-demographic characteristics of the mother (10.4%).
 

Positive benefits of eating fish irrespective of type

What mattered was not which types of fish were eaten but whether the woman ate fish or not, which emerged as the most important factor. The mother’s prenatal mercury level was positively associated with her child’s IQ if she had eaten fish in pregnancy, but not if she had not.

“Significantly beneficial associations with prenatal mercury levels were shown for total and performance IQ, mathematical/scientific reasoning, and birth weight, in fish-consuming versus non–fish-consuming mothers,” the authors said. “These beneficial findings are similar to those observed in the Seychelles, where fish consumption is high and prenatal mercury levels are 10 times higher than U.S. levels.”

Caroline Taylor, PhD, senior research fellow and coauthor of the study, said: “We found that the mother’s mercury level during pregnancy is likely to have no adverse effect on the development of the child provided that the mother eats fish. If she did not eat fish, then there was some evidence that her mercury level could have a harmful effect on the child.”

The team said that this was because the essential nutrients in the fish could be protective against the mercury content of the fish. “This could be because of the benefits from the mix of essential nutrients that fish provides, including long-chain fatty acids, iodine, vitamin D and selenium,” said Dr. Taylor.
 

Women stopped eating any fish ‘to be on the safe side’

The authors called for a change in official guidance. “Health advice to pregnant women concerning consumption of mercury-containing foods has resulted in anxiety, with subsequent avoidance of fish consumption during pregnancy.” Seafood contains many nutrients crucial for children’s growth and development, but “there is the possibility that some women will stop eating any fish ‘to be on the safe side.’ ”

The authors said: “Although advice to pregnant women was generally that fish was good, the accompanying caveat was to avoid fish with high levels of mercury. Psychologically, the latter was the message that women remembered, and the general reaction has been for women to reduce their intake of all seafood.”

Coauthor Jean Golding, emeritus professor of pediatric and perinatal epidemiology at the University of Bristol, said: “It is important that advisories from health professionals revise their advice warning against eating certain species of fish. There is no evidence of harm from these fish, but there is evidence from different countries that such advice can cause confusion in pregnant women. The guidance for pregnancy should highlight ‘Eat at least two portions of fish a week, one of which should be oily’ – and omit all warnings that certain fish should not be eaten.”

The study was funded via core support for ALSPAC by the UK Medical Research Council and the UK Wellcome Trust.

A version of this article first appeared on Medscape UK.