Physician: Starve Thyself. Are Eating Disorders the Last Taboo in the Medical World?

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Physician: Starve Thyself. Are Eating Disorders the Last Taboo in the Medical World?

So taboo it merits barely a whisper in the literature, the subject of eating disorders among American medical students, residents, and physicians often hides behind a cloak of anonymity on virtual bulletin boards. One such posting:

Does anybody have any experience with dealing with an eating disorder and being in med school? I’ve recently been told I’m no longer able to participate in clinical work (i’m in 3rd year) because my doctor contacted the school in regards to my health. I’m not underweight and my electrolyte balance is normal. I’m just looking for anybody who has been in a similar situation or anybody who might have any advice or support – it’s been a tough little while. ... I’ve made many positive changes, stopped abusing phentermine and ephedra, stopped overexercising, but apparently it hasn’t been enough.

Dr. Vicki Berkus

Physicians seek treatment for eating disorders from individual physicians and eating disorders programs, but often only after taking desperate measures to control the disorder themselves, taking advantage of knowledge and medical insight beyond the reach of even the most well-read consumer seeking an out.

"Of course, there is a lot of individual-to-individual variation, but if I compile all of my experience, I would say physicians are more resistant than others to recognize and come to terms with the idea that they have a serious problem and they need help," said Dr. Ovidio Bermudez, chief medical officer of the Eating Recovery Center in Denver and past president of the National Eating Disorders Association.

A genetic predisposition to eating disorders likely occurs no more frequently in the families of medical professionals than in any other, but certainly the environment that nourishes young doctors contains abundant seeds for triggering the disorder, according to eating disorders specialists.

"I think it is more rampant than people know. These are high achievers, and the pressure is on," said Dr. Vicki Berkus, medical director of the eating disorders program at Sierra Tucson Treatment Center in Arizona.

Medical school and residency training are particularly challenging for those at risk, combining competition, stress, and wildly erratic schedules for eating, sleeping, and self care, agreed Dr. Jennifer L. Gaudiani, assistant medical director the ACUTE Center for Eating Disorders at Denver Health.

"Temperamental traits such as perfectionism, rigidity, and anxiety can be very useful in the pursuit of a medical career," Dr. Gaudiani said in a telephone interview. "A lot of us share them and have done very well by them."

But against the backdrop of a fat-phobic, diet-obsessed culture and those hard-driving personality traits, the uniquely stressful professional demands that are inherent in medical training and beyond may unmask disordered eating or sharply accelerate patterns left over from adolescence.

"Whoosh," said Dr. Gaudiani. "It’s a bonfire."

Secrecy complicates the issue and often adds fuel to the disorder.

"Doctors can be an unusually unsympathetic group when it comes to colleagues’ illnesses of any kind," she noted.

Underpaid, overworked residents are virtual poster children for compassion fatigue, notoriously tough on "colleagues not able to pull their weight," said Dr. Gaudiani.

So most residents with the disorder hide the problem as do many physicians in practice.

"Depending on the severity, it’s harder to hide anorexia," said Dr. Berkus, past president of the International Association of Eating Disorders Professionals.

Dr. Ovidio Bermudez

Compulsive overeating and purging and/or laxative use can be concealed for some time, she added. Compulsive exercise can be seen as not only socially acceptable but also admirable, especially among professional men.

In lecturing to medical school classes about their risk for eating disorders, however, Dr. Berkus said, "It’s not unusual to see people tearing up, and two or three people will come up afterward to find out where they can get help.

"It takes so much energy to keep the secret."

Some medical professionals plaintively, but anonymously, appeal for advice on such websites as Student Doctor Network.

I have binge eating disorder and been in medical school for a year and a half. I’ve been in recovery for a while, but sometimes I have setbacks and become a whole different person. There’s a lot of unconciousness about eating disorders, I mean, as medical students, we all know what they are all about, but we don’t even take them as serious as we should. Eating disorders are illnesses just like diabetes and cancer and there’s no cure, just treatments to control them. I just want to know if there’s the experience of dealing with an eating disorder (the depression, lack of concentration, and neurosis that are involved) and the stress, lack of sleep, and amount of work that involves medical school. Although this is serious, I know several attendings and professors that don’t really care about it, so is it correct to mention it [in residency] interviews?

 

 

Responses to the posting filtered in on the bulletin board, ranging from supportive notes of encouragement to harsh responses from colleagues who questioned whether a person with an eating disorder can competently serve patients or keep up with the pace of training or medical practice.

Wrote one: Despite how good a narrative it may seem to you to be bouncing back and striving forward, medicine is an extremely high pressure lifestyle that can wreak havoc on anyone, and stress/sleep/competition are primary triggers for a range of mental illnesses. It does no one any good, not society, not to yourself, to have some med student break down, or a resident wash out, or yet another doctor commit suicide.

The fear of discovery or being rejected by and drummed out of the profession, casts a dark shadow over professionals struggling with eating disorders, emphasized Dr. Berkus.

"In a person with an eating disorder, the message that ‘you don’t belong,’ can be a universal message that they’ve carried for a long time," she said.

On the website, some medical students questioned the judgment of program coordinators who insisted the poster get help before continuing her studies.

Said one: Exactly what danger is this person in risk of? Passing out while rounding? Erosive esophagitis? Neither of these truly present a risk to the patient. "Danger to others" implies explicit threats, or impaired behavior, e.g., substance abuse. Certainly she is placing her own body at risk, but what about those who overeat and place themselves at risk for other complications?

Some professionals ultimately decide to step away to seek treatment, which can be lengthy and expensive. On a website in the United Kingdom, a student posted: I was supposed to start my residency (how do you call it? Internships?) next month, but i decided to stop my study for a while. I just physically/mentally cannot handle it right now. It is so sad ... Another disadvantage i developed because of my ED: I faint! Another taboo in the medical field! I used to love watching surgery, now I’m not so sure. I’m much too scared to pass out.

By the time medical students and physicians seek help, they often require inpatient hospitalization because of the extent of the medical and psychiatric complications of their disease, said Dr. Bermudez.

"I don’t think many physicians, young or old, graduated or not, are willing to recognize how serious the issue is.

"Denial is part and parcel of the eating disorder mentality but, in doctors, it runs a little deeper. Medical training reinforces that mind-set of, ‘I can handle it’ or ‘I have it under control to the ‘nth degree.’

"Generally speaking, we don’t make the best patients."

On the other hand, medical professionals, like other eating disorders patients, "absolutely can recover," when they fully commit to treatment, returning to successfully complete their training or reclaim a vibrant office or clinic practice.

"Eating disorders are treatable illnesses, much like depression," stressed Dr. Bermudez. "The propensity remains with an individual – [he or she maintains] the vulnerability factors, but those can go back to being under check."

Anecdotally, he’s seen it happen, as have the other experts interviewed for this story. But data chronicling the prevalence of eating disorders in the medical profession, their severity or their prognosis, are scarce.

Remarkably, the most recent study documenting the prevalence of eating disorders among U.S. medical students was published in December 1985 (J. Nerv. Ment. Dis. 1985;173:734-7). The article reported a 15% lifetime prevalence of an eating disorder among 121 female medical students aged 19-36 years. Specifically, 10 had a past history of bulimia, 5 had a current history of bulimia, and 4 had a history of anorexia nervosa.

However, the study preceded publication of the DSM-IV by many years, and subsequent studies have determined that anorexia nervosa, in particular, is diagnosed significantly more often under DSM-IV criteria.

Current dissertation research by a doctoral psychology student at Midwestern University in Downers Grove, Ill., has more recently found a prevalence of significant eating disorders and behaviors of nearly 13% among 700 male and female graduate health care professionals, including medical students.

That rate, according to Midwestern behavioral medicine professor Ann Sauer, Ph.D., "was very similar to that found in the general population ... [with] no significant difference in the rate of eating disorders attitudes and behaviors among the different disciplines."

"Working in a medical school/graduate school setting, I have also found that there is a real lack of information available on this topic," said Dr. Sauer in an interview.

 

 

Until more is published, the story of eating disorders among physicians continues to be shrouded in anonymity and secrecy, providing only occasional glimpses of the toll taken on the profession in general and the struggle faced by individuals with anorexia and/or bulimia.

Last summer, in response to a New York Times blog about bullying in medical school, a friend memorialized a 51-year-old, Columbia University–trained physician, Dr. Connie L. Rizzo, who reportedly died of complications from anorexia. The poster, a former student, said Dr. Rizzo "told me that her medical school experience was so horrific that she remained traumatized from the incidents which occurred [there]...

"The slight, beautiful, shy, Italian immigrant student from a family of artisans with an IQ of 180 turned out to be a dedicated healer but died from complications brought on by anorexia. A few weeks before she died she told me that she dreamed of a flower whose petals were being torn off by angry weeds even as it just wanted its own little reach of sun."

Efforts by this newspaper to find out more details about Dr. Rizzo or the friend who poignantly memorialized her, were unsuccessful.

ACUTE Eating Disorders Unit Expands to Accommodate Need

A unique, intensive medical stabilization unit for patients with severe eating disorders is expanding, based on high demand, according to Dr. Gaudiani, assistant medical director for the Acute Comprehensive Urgent Treatment of Eating Disorders (ACUTE) Center at Denver Health.

Beginning in the fall of 2008, a five-patient inpatient unit opened there to serve eating disorders patients who delayed getting treatment until their conditions had destabilized to the point that, "to their astonishment, they were too sick to be served," even at dedicated inpatient eating disorders units within psychiatric facilities, she said.

The Center accepts only patients whose weight has fallen below 70% of ideal body weight.

The first 200 or so patients served by the center ranged in age from 17 to 65 years (mean, 27 years), and averaged a body mass index of 12.5 upon admission. The average length of stay was 2 weeks.

In response to increased demand, the unit is now expanding to eight beds and may further increase its census, said Dr. Gaudiani in an interview.

A report on outcomes published this year in the International Journal of Eating Disorders found that in the unit, 44% of patients had hypoglycemia, 76%, abnormal liver function, and 83%, abnormal bone density, and 45% developed refeeding hypophosphatemia. While on the unit, 92% had hypothermia (Int. J. Eat. Disord. 2012;45:85-92).

In the community, patients with severe eating disorders often are admitted to intensive care units for brief stabilization, which is "at best, a Band-Aid solution, and at worse, dangerous," since complications of refeeding can occur following discharge, said Dr. Gaudiani.

Once patients are stabilized at the ACUTE unit, they are transferred to inpatient residential eating disorders programs, and often fare well, she added in an interview.

Dr. Bermudez said the need for the unit, which collaborates with his center for psychiatric care, demonstrates the need for better education and training in eating disorders among medical professionals.

"Early recognition and timely intervention is of the utmost importance," he said.

When patients or families present to primary care or specialists in cardiology, ob.gyn., gastroenterology, or other subspecialties, physicians need to be alert for subtle symptoms in patients who may try to hide symptoms of the disease.

"It’s a clear area where we’ve got to chisel away at the obvious," said Dr. Bermudez.

"Loved ones quite often express the concern that they consulted with a physician who falsely reassured them about the seriousness of a patient’s condition. In defense of physicians, this is not a population that wants to be discovered."

On the other hand, certain medical conditions such as electrolyte imbalances or cardiac abnormalities, particularly in adolescents or young adults, should "make the light go off, so they say, ‘Aha!’ " he said.

A number of resources exist to educate physicians about promptly diagnosing eating disorders, including a video CME course offered by the American Medical Association and a 18-page downloadable pamphlet for professionals designed by the Academy for Eating Disorders.

Beyond distance learning or didactic training, however, awareness comes through "rubbing elbows with these patients for awhile" so that the patterns and behaviors intrinsic to the disorder become obvious, said Dr. Bermudez.

If physicians, medical students, and residents begin to recognize eating disorders in patients, they may also begin to see its signs and symptoms among themselves and their peers, he added.

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So taboo it merits barely a whisper in the literature, the subject of eating disorders among American medical students, residents, and physicians often hides behind a cloak of anonymity on virtual bulletin boards. One such posting:

Does anybody have any experience with dealing with an eating disorder and being in med school? I’ve recently been told I’m no longer able to participate in clinical work (i’m in 3rd year) because my doctor contacted the school in regards to my health. I’m not underweight and my electrolyte balance is normal. I’m just looking for anybody who has been in a similar situation or anybody who might have any advice or support – it’s been a tough little while. ... I’ve made many positive changes, stopped abusing phentermine and ephedra, stopped overexercising, but apparently it hasn’t been enough.

Dr. Vicki Berkus

Physicians seek treatment for eating disorders from individual physicians and eating disorders programs, but often only after taking desperate measures to control the disorder themselves, taking advantage of knowledge and medical insight beyond the reach of even the most well-read consumer seeking an out.

"Of course, there is a lot of individual-to-individual variation, but if I compile all of my experience, I would say physicians are more resistant than others to recognize and come to terms with the idea that they have a serious problem and they need help," said Dr. Ovidio Bermudez, chief medical officer of the Eating Recovery Center in Denver and past president of the National Eating Disorders Association.

A genetic predisposition to eating disorders likely occurs no more frequently in the families of medical professionals than in any other, but certainly the environment that nourishes young doctors contains abundant seeds for triggering the disorder, according to eating disorders specialists.

"I think it is more rampant than people know. These are high achievers, and the pressure is on," said Dr. Vicki Berkus, medical director of the eating disorders program at Sierra Tucson Treatment Center in Arizona.

Medical school and residency training are particularly challenging for those at risk, combining competition, stress, and wildly erratic schedules for eating, sleeping, and self care, agreed Dr. Jennifer L. Gaudiani, assistant medical director the ACUTE Center for Eating Disorders at Denver Health.

"Temperamental traits such as perfectionism, rigidity, and anxiety can be very useful in the pursuit of a medical career," Dr. Gaudiani said in a telephone interview. "A lot of us share them and have done very well by them."

But against the backdrop of a fat-phobic, diet-obsessed culture and those hard-driving personality traits, the uniquely stressful professional demands that are inherent in medical training and beyond may unmask disordered eating or sharply accelerate patterns left over from adolescence.

"Whoosh," said Dr. Gaudiani. "It’s a bonfire."

Secrecy complicates the issue and often adds fuel to the disorder.

"Doctors can be an unusually unsympathetic group when it comes to colleagues’ illnesses of any kind," she noted.

Underpaid, overworked residents are virtual poster children for compassion fatigue, notoriously tough on "colleagues not able to pull their weight," said Dr. Gaudiani.

So most residents with the disorder hide the problem as do many physicians in practice.

"Depending on the severity, it’s harder to hide anorexia," said Dr. Berkus, past president of the International Association of Eating Disorders Professionals.

Dr. Ovidio Bermudez

Compulsive overeating and purging and/or laxative use can be concealed for some time, she added. Compulsive exercise can be seen as not only socially acceptable but also admirable, especially among professional men.

In lecturing to medical school classes about their risk for eating disorders, however, Dr. Berkus said, "It’s not unusual to see people tearing up, and two or three people will come up afterward to find out where they can get help.

"It takes so much energy to keep the secret."

Some medical professionals plaintively, but anonymously, appeal for advice on such websites as Student Doctor Network.

I have binge eating disorder and been in medical school for a year and a half. I’ve been in recovery for a while, but sometimes I have setbacks and become a whole different person. There’s a lot of unconciousness about eating disorders, I mean, as medical students, we all know what they are all about, but we don’t even take them as serious as we should. Eating disorders are illnesses just like diabetes and cancer and there’s no cure, just treatments to control them. I just want to know if there’s the experience of dealing with an eating disorder (the depression, lack of concentration, and neurosis that are involved) and the stress, lack of sleep, and amount of work that involves medical school. Although this is serious, I know several attendings and professors that don’t really care about it, so is it correct to mention it [in residency] interviews?

 

 

Responses to the posting filtered in on the bulletin board, ranging from supportive notes of encouragement to harsh responses from colleagues who questioned whether a person with an eating disorder can competently serve patients or keep up with the pace of training or medical practice.

Wrote one: Despite how good a narrative it may seem to you to be bouncing back and striving forward, medicine is an extremely high pressure lifestyle that can wreak havoc on anyone, and stress/sleep/competition are primary triggers for a range of mental illnesses. It does no one any good, not society, not to yourself, to have some med student break down, or a resident wash out, or yet another doctor commit suicide.

The fear of discovery or being rejected by and drummed out of the profession, casts a dark shadow over professionals struggling with eating disorders, emphasized Dr. Berkus.

"In a person with an eating disorder, the message that ‘you don’t belong,’ can be a universal message that they’ve carried for a long time," she said.

On the website, some medical students questioned the judgment of program coordinators who insisted the poster get help before continuing her studies.

Said one: Exactly what danger is this person in risk of? Passing out while rounding? Erosive esophagitis? Neither of these truly present a risk to the patient. "Danger to others" implies explicit threats, or impaired behavior, e.g., substance abuse. Certainly she is placing her own body at risk, but what about those who overeat and place themselves at risk for other complications?

Some professionals ultimately decide to step away to seek treatment, which can be lengthy and expensive. On a website in the United Kingdom, a student posted: I was supposed to start my residency (how do you call it? Internships?) next month, but i decided to stop my study for a while. I just physically/mentally cannot handle it right now. It is so sad ... Another disadvantage i developed because of my ED: I faint! Another taboo in the medical field! I used to love watching surgery, now I’m not so sure. I’m much too scared to pass out.

By the time medical students and physicians seek help, they often require inpatient hospitalization because of the extent of the medical and psychiatric complications of their disease, said Dr. Bermudez.

"I don’t think many physicians, young or old, graduated or not, are willing to recognize how serious the issue is.

"Denial is part and parcel of the eating disorder mentality but, in doctors, it runs a little deeper. Medical training reinforces that mind-set of, ‘I can handle it’ or ‘I have it under control to the ‘nth degree.’

"Generally speaking, we don’t make the best patients."

On the other hand, medical professionals, like other eating disorders patients, "absolutely can recover," when they fully commit to treatment, returning to successfully complete their training or reclaim a vibrant office or clinic practice.

"Eating disorders are treatable illnesses, much like depression," stressed Dr. Bermudez. "The propensity remains with an individual – [he or she maintains] the vulnerability factors, but those can go back to being under check."

Anecdotally, he’s seen it happen, as have the other experts interviewed for this story. But data chronicling the prevalence of eating disorders in the medical profession, their severity or their prognosis, are scarce.

Remarkably, the most recent study documenting the prevalence of eating disorders among U.S. medical students was published in December 1985 (J. Nerv. Ment. Dis. 1985;173:734-7). The article reported a 15% lifetime prevalence of an eating disorder among 121 female medical students aged 19-36 years. Specifically, 10 had a past history of bulimia, 5 had a current history of bulimia, and 4 had a history of anorexia nervosa.

However, the study preceded publication of the DSM-IV by many years, and subsequent studies have determined that anorexia nervosa, in particular, is diagnosed significantly more often under DSM-IV criteria.

Current dissertation research by a doctoral psychology student at Midwestern University in Downers Grove, Ill., has more recently found a prevalence of significant eating disorders and behaviors of nearly 13% among 700 male and female graduate health care professionals, including medical students.

That rate, according to Midwestern behavioral medicine professor Ann Sauer, Ph.D., "was very similar to that found in the general population ... [with] no significant difference in the rate of eating disorders attitudes and behaviors among the different disciplines."

"Working in a medical school/graduate school setting, I have also found that there is a real lack of information available on this topic," said Dr. Sauer in an interview.

 

 

Until more is published, the story of eating disorders among physicians continues to be shrouded in anonymity and secrecy, providing only occasional glimpses of the toll taken on the profession in general and the struggle faced by individuals with anorexia and/or bulimia.

Last summer, in response to a New York Times blog about bullying in medical school, a friend memorialized a 51-year-old, Columbia University–trained physician, Dr. Connie L. Rizzo, who reportedly died of complications from anorexia. The poster, a former student, said Dr. Rizzo "told me that her medical school experience was so horrific that she remained traumatized from the incidents which occurred [there]...

"The slight, beautiful, shy, Italian immigrant student from a family of artisans with an IQ of 180 turned out to be a dedicated healer but died from complications brought on by anorexia. A few weeks before she died she told me that she dreamed of a flower whose petals were being torn off by angry weeds even as it just wanted its own little reach of sun."

Efforts by this newspaper to find out more details about Dr. Rizzo or the friend who poignantly memorialized her, were unsuccessful.

ACUTE Eating Disorders Unit Expands to Accommodate Need

A unique, intensive medical stabilization unit for patients with severe eating disorders is expanding, based on high demand, according to Dr. Gaudiani, assistant medical director for the Acute Comprehensive Urgent Treatment of Eating Disorders (ACUTE) Center at Denver Health.

Beginning in the fall of 2008, a five-patient inpatient unit opened there to serve eating disorders patients who delayed getting treatment until their conditions had destabilized to the point that, "to their astonishment, they were too sick to be served," even at dedicated inpatient eating disorders units within psychiatric facilities, she said.

The Center accepts only patients whose weight has fallen below 70% of ideal body weight.

The first 200 or so patients served by the center ranged in age from 17 to 65 years (mean, 27 years), and averaged a body mass index of 12.5 upon admission. The average length of stay was 2 weeks.

In response to increased demand, the unit is now expanding to eight beds and may further increase its census, said Dr. Gaudiani in an interview.

A report on outcomes published this year in the International Journal of Eating Disorders found that in the unit, 44% of patients had hypoglycemia, 76%, abnormal liver function, and 83%, abnormal bone density, and 45% developed refeeding hypophosphatemia. While on the unit, 92% had hypothermia (Int. J. Eat. Disord. 2012;45:85-92).

In the community, patients with severe eating disorders often are admitted to intensive care units for brief stabilization, which is "at best, a Band-Aid solution, and at worse, dangerous," since complications of refeeding can occur following discharge, said Dr. Gaudiani.

Once patients are stabilized at the ACUTE unit, they are transferred to inpatient residential eating disorders programs, and often fare well, she added in an interview.

Dr. Bermudez said the need for the unit, which collaborates with his center for psychiatric care, demonstrates the need for better education and training in eating disorders among medical professionals.

"Early recognition and timely intervention is of the utmost importance," he said.

When patients or families present to primary care or specialists in cardiology, ob.gyn., gastroenterology, or other subspecialties, physicians need to be alert for subtle symptoms in patients who may try to hide symptoms of the disease.

"It’s a clear area where we’ve got to chisel away at the obvious," said Dr. Bermudez.

"Loved ones quite often express the concern that they consulted with a physician who falsely reassured them about the seriousness of a patient’s condition. In defense of physicians, this is not a population that wants to be discovered."

On the other hand, certain medical conditions such as electrolyte imbalances or cardiac abnormalities, particularly in adolescents or young adults, should "make the light go off, so they say, ‘Aha!’ " he said.

A number of resources exist to educate physicians about promptly diagnosing eating disorders, including a video CME course offered by the American Medical Association and a 18-page downloadable pamphlet for professionals designed by the Academy for Eating Disorders.

Beyond distance learning or didactic training, however, awareness comes through "rubbing elbows with these patients for awhile" so that the patterns and behaviors intrinsic to the disorder become obvious, said Dr. Bermudez.

If physicians, medical students, and residents begin to recognize eating disorders in patients, they may also begin to see its signs and symptoms among themselves and their peers, he added.

So taboo it merits barely a whisper in the literature, the subject of eating disorders among American medical students, residents, and physicians often hides behind a cloak of anonymity on virtual bulletin boards. One such posting:

Does anybody have any experience with dealing with an eating disorder and being in med school? I’ve recently been told I’m no longer able to participate in clinical work (i’m in 3rd year) because my doctor contacted the school in regards to my health. I’m not underweight and my electrolyte balance is normal. I’m just looking for anybody who has been in a similar situation or anybody who might have any advice or support – it’s been a tough little while. ... I’ve made many positive changes, stopped abusing phentermine and ephedra, stopped overexercising, but apparently it hasn’t been enough.

Dr. Vicki Berkus

Physicians seek treatment for eating disorders from individual physicians and eating disorders programs, but often only after taking desperate measures to control the disorder themselves, taking advantage of knowledge and medical insight beyond the reach of even the most well-read consumer seeking an out.

"Of course, there is a lot of individual-to-individual variation, but if I compile all of my experience, I would say physicians are more resistant than others to recognize and come to terms with the idea that they have a serious problem and they need help," said Dr. Ovidio Bermudez, chief medical officer of the Eating Recovery Center in Denver and past president of the National Eating Disorders Association.

A genetic predisposition to eating disorders likely occurs no more frequently in the families of medical professionals than in any other, but certainly the environment that nourishes young doctors contains abundant seeds for triggering the disorder, according to eating disorders specialists.

"I think it is more rampant than people know. These are high achievers, and the pressure is on," said Dr. Vicki Berkus, medical director of the eating disorders program at Sierra Tucson Treatment Center in Arizona.

Medical school and residency training are particularly challenging for those at risk, combining competition, stress, and wildly erratic schedules for eating, sleeping, and self care, agreed Dr. Jennifer L. Gaudiani, assistant medical director the ACUTE Center for Eating Disorders at Denver Health.

"Temperamental traits such as perfectionism, rigidity, and anxiety can be very useful in the pursuit of a medical career," Dr. Gaudiani said in a telephone interview. "A lot of us share them and have done very well by them."

But against the backdrop of a fat-phobic, diet-obsessed culture and those hard-driving personality traits, the uniquely stressful professional demands that are inherent in medical training and beyond may unmask disordered eating or sharply accelerate patterns left over from adolescence.

"Whoosh," said Dr. Gaudiani. "It’s a bonfire."

Secrecy complicates the issue and often adds fuel to the disorder.

"Doctors can be an unusually unsympathetic group when it comes to colleagues’ illnesses of any kind," she noted.

Underpaid, overworked residents are virtual poster children for compassion fatigue, notoriously tough on "colleagues not able to pull their weight," said Dr. Gaudiani.

So most residents with the disorder hide the problem as do many physicians in practice.

"Depending on the severity, it’s harder to hide anorexia," said Dr. Berkus, past president of the International Association of Eating Disorders Professionals.

Dr. Ovidio Bermudez

Compulsive overeating and purging and/or laxative use can be concealed for some time, she added. Compulsive exercise can be seen as not only socially acceptable but also admirable, especially among professional men.

In lecturing to medical school classes about their risk for eating disorders, however, Dr. Berkus said, "It’s not unusual to see people tearing up, and two or three people will come up afterward to find out where they can get help.

"It takes so much energy to keep the secret."

Some medical professionals plaintively, but anonymously, appeal for advice on such websites as Student Doctor Network.

I have binge eating disorder and been in medical school for a year and a half. I’ve been in recovery for a while, but sometimes I have setbacks and become a whole different person. There’s a lot of unconciousness about eating disorders, I mean, as medical students, we all know what they are all about, but we don’t even take them as serious as we should. Eating disorders are illnesses just like diabetes and cancer and there’s no cure, just treatments to control them. I just want to know if there’s the experience of dealing with an eating disorder (the depression, lack of concentration, and neurosis that are involved) and the stress, lack of sleep, and amount of work that involves medical school. Although this is serious, I know several attendings and professors that don’t really care about it, so is it correct to mention it [in residency] interviews?

 

 

Responses to the posting filtered in on the bulletin board, ranging from supportive notes of encouragement to harsh responses from colleagues who questioned whether a person with an eating disorder can competently serve patients or keep up with the pace of training or medical practice.

Wrote one: Despite how good a narrative it may seem to you to be bouncing back and striving forward, medicine is an extremely high pressure lifestyle that can wreak havoc on anyone, and stress/sleep/competition are primary triggers for a range of mental illnesses. It does no one any good, not society, not to yourself, to have some med student break down, or a resident wash out, or yet another doctor commit suicide.

The fear of discovery or being rejected by and drummed out of the profession, casts a dark shadow over professionals struggling with eating disorders, emphasized Dr. Berkus.

"In a person with an eating disorder, the message that ‘you don’t belong,’ can be a universal message that they’ve carried for a long time," she said.

On the website, some medical students questioned the judgment of program coordinators who insisted the poster get help before continuing her studies.

Said one: Exactly what danger is this person in risk of? Passing out while rounding? Erosive esophagitis? Neither of these truly present a risk to the patient. "Danger to others" implies explicit threats, or impaired behavior, e.g., substance abuse. Certainly she is placing her own body at risk, but what about those who overeat and place themselves at risk for other complications?

Some professionals ultimately decide to step away to seek treatment, which can be lengthy and expensive. On a website in the United Kingdom, a student posted: I was supposed to start my residency (how do you call it? Internships?) next month, but i decided to stop my study for a while. I just physically/mentally cannot handle it right now. It is so sad ... Another disadvantage i developed because of my ED: I faint! Another taboo in the medical field! I used to love watching surgery, now I’m not so sure. I’m much too scared to pass out.

By the time medical students and physicians seek help, they often require inpatient hospitalization because of the extent of the medical and psychiatric complications of their disease, said Dr. Bermudez.

"I don’t think many physicians, young or old, graduated or not, are willing to recognize how serious the issue is.

"Denial is part and parcel of the eating disorder mentality but, in doctors, it runs a little deeper. Medical training reinforces that mind-set of, ‘I can handle it’ or ‘I have it under control to the ‘nth degree.’

"Generally speaking, we don’t make the best patients."

On the other hand, medical professionals, like other eating disorders patients, "absolutely can recover," when they fully commit to treatment, returning to successfully complete their training or reclaim a vibrant office or clinic practice.

"Eating disorders are treatable illnesses, much like depression," stressed Dr. Bermudez. "The propensity remains with an individual – [he or she maintains] the vulnerability factors, but those can go back to being under check."

Anecdotally, he’s seen it happen, as have the other experts interviewed for this story. But data chronicling the prevalence of eating disorders in the medical profession, their severity or their prognosis, are scarce.

Remarkably, the most recent study documenting the prevalence of eating disorders among U.S. medical students was published in December 1985 (J. Nerv. Ment. Dis. 1985;173:734-7). The article reported a 15% lifetime prevalence of an eating disorder among 121 female medical students aged 19-36 years. Specifically, 10 had a past history of bulimia, 5 had a current history of bulimia, and 4 had a history of anorexia nervosa.

However, the study preceded publication of the DSM-IV by many years, and subsequent studies have determined that anorexia nervosa, in particular, is diagnosed significantly more often under DSM-IV criteria.

Current dissertation research by a doctoral psychology student at Midwestern University in Downers Grove, Ill., has more recently found a prevalence of significant eating disorders and behaviors of nearly 13% among 700 male and female graduate health care professionals, including medical students.

That rate, according to Midwestern behavioral medicine professor Ann Sauer, Ph.D., "was very similar to that found in the general population ... [with] no significant difference in the rate of eating disorders attitudes and behaviors among the different disciplines."

"Working in a medical school/graduate school setting, I have also found that there is a real lack of information available on this topic," said Dr. Sauer in an interview.

 

 

Until more is published, the story of eating disorders among physicians continues to be shrouded in anonymity and secrecy, providing only occasional glimpses of the toll taken on the profession in general and the struggle faced by individuals with anorexia and/or bulimia.

Last summer, in response to a New York Times blog about bullying in medical school, a friend memorialized a 51-year-old, Columbia University–trained physician, Dr. Connie L. Rizzo, who reportedly died of complications from anorexia. The poster, a former student, said Dr. Rizzo "told me that her medical school experience was so horrific that she remained traumatized from the incidents which occurred [there]...

"The slight, beautiful, shy, Italian immigrant student from a family of artisans with an IQ of 180 turned out to be a dedicated healer but died from complications brought on by anorexia. A few weeks before she died she told me that she dreamed of a flower whose petals were being torn off by angry weeds even as it just wanted its own little reach of sun."

Efforts by this newspaper to find out more details about Dr. Rizzo or the friend who poignantly memorialized her, were unsuccessful.

ACUTE Eating Disorders Unit Expands to Accommodate Need

A unique, intensive medical stabilization unit for patients with severe eating disorders is expanding, based on high demand, according to Dr. Gaudiani, assistant medical director for the Acute Comprehensive Urgent Treatment of Eating Disorders (ACUTE) Center at Denver Health.

Beginning in the fall of 2008, a five-patient inpatient unit opened there to serve eating disorders patients who delayed getting treatment until their conditions had destabilized to the point that, "to their astonishment, they were too sick to be served," even at dedicated inpatient eating disorders units within psychiatric facilities, she said.

The Center accepts only patients whose weight has fallen below 70% of ideal body weight.

The first 200 or so patients served by the center ranged in age from 17 to 65 years (mean, 27 years), and averaged a body mass index of 12.5 upon admission. The average length of stay was 2 weeks.

In response to increased demand, the unit is now expanding to eight beds and may further increase its census, said Dr. Gaudiani in an interview.

A report on outcomes published this year in the International Journal of Eating Disorders found that in the unit, 44% of patients had hypoglycemia, 76%, abnormal liver function, and 83%, abnormal bone density, and 45% developed refeeding hypophosphatemia. While on the unit, 92% had hypothermia (Int. J. Eat. Disord. 2012;45:85-92).

In the community, patients with severe eating disorders often are admitted to intensive care units for brief stabilization, which is "at best, a Band-Aid solution, and at worse, dangerous," since complications of refeeding can occur following discharge, said Dr. Gaudiani.

Once patients are stabilized at the ACUTE unit, they are transferred to inpatient residential eating disorders programs, and often fare well, she added in an interview.

Dr. Bermudez said the need for the unit, which collaborates with his center for psychiatric care, demonstrates the need for better education and training in eating disorders among medical professionals.

"Early recognition and timely intervention is of the utmost importance," he said.

When patients or families present to primary care or specialists in cardiology, ob.gyn., gastroenterology, or other subspecialties, physicians need to be alert for subtle symptoms in patients who may try to hide symptoms of the disease.

"It’s a clear area where we’ve got to chisel away at the obvious," said Dr. Bermudez.

"Loved ones quite often express the concern that they consulted with a physician who falsely reassured them about the seriousness of a patient’s condition. In defense of physicians, this is not a population that wants to be discovered."

On the other hand, certain medical conditions such as electrolyte imbalances or cardiac abnormalities, particularly in adolescents or young adults, should "make the light go off, so they say, ‘Aha!’ " he said.

A number of resources exist to educate physicians about promptly diagnosing eating disorders, including a video CME course offered by the American Medical Association and a 18-page downloadable pamphlet for professionals designed by the Academy for Eating Disorders.

Beyond distance learning or didactic training, however, awareness comes through "rubbing elbows with these patients for awhile" so that the patterns and behaviors intrinsic to the disorder become obvious, said Dr. Bermudez.

If physicians, medical students, and residents begin to recognize eating disorders in patients, they may also begin to see its signs and symptoms among themselves and their peers, he added.

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Impact on IVF Success May Not Be So Hefty After All

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SANTA BARBARA, CALIF. – Lower-than-average clinical pregnancy rates among obese women undergoing assisted reproductive techniques may be less relevant clinically than they seem at first blush, according to Dr. Marcelle I. Cedars.

A third of American women today are overweight or obese, she pointed out, and excess weight can translate into pregnancy complications and risks to the fetus.

But actual differences in ART outcomes may not warrant drastic steps, such as denying in vitro fertilization (IVF) treatment for women who are overweight, she argued.

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Although being obese can cause pregnancy complications, overweight women should not be denied access to assisted reproductive techniques.

"If you look at the abstracts of all these papers, they list these huge significance factors, but if you’re looking at tens of thousands of cycles, a very small reduction in pregnancy rate is highly, highly significant," said Dr. Cedars, professor of obstetrics, gynecology, and reproductive sciences and director of the division of reproductive endocrinology and infertility at the University of California, San Francisco.

For example, she referenced a national study based on Society for Assisted Reproductive Technology data that documented significantly more cancelled treatment cycles because of a low response rate and increased odds of treatment failure among heavier ART patients (Fertil. Steril. 2011;96:820-5). In that study, the greatest decrements in ART success were among women with BMIs of 50 kg/m2 or higher.

At that BMI (translating into a woman about 5 feet 5 inches tall who weighs more than 300 pounds), pregnancy rates in the SART database averaged 36%, compared with 43% for those with a BMI of 18.5 kg/m2 (about 5 foot 5 and 110 pounds).

For women with BMIs between 30 and 35 kg/m2 (5 foot 5 and 180-210 pounds), the pregnancy rate was 41%, Dr. Cedars reported at a conference on IVF and embryo transfer, sponsored by the University of California, Los Angeles.

This study and others like it have prompted some IVF programs to refuse treatment to women with BMIs of 30 kg/m2 and above, according to Dr. Cedars.

But the disparity in pregnancy rates between women with BMIs of 30 vs. 18.5 is, in fact, about the same as the disparity between Asian women compared with white women following ART, she noted.

"Are you going to refuse to treat Asians because their success rate is lower?" she asked rhetorically.

Obesity factors related to ART success take on less significance in older patients, she noted, "because obviously the strongest driver in your older patients is age.

"Age trumps everything, so if your plan is going to make these women lose weight, the time that might take them if they’re older is going to be way more significant than any potential benefit in terms of weight loss," she said.

Based on small studies, acute weight loss appears to reduce fertilization rates rather than improve the odds of ART success, said Dr. Cedars.

She reported no relevant financial relationships.

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SANTA BARBARA, CALIF. – Lower-than-average clinical pregnancy rates among obese women undergoing assisted reproductive techniques may be less relevant clinically than they seem at first blush, according to Dr. Marcelle I. Cedars.

A third of American women today are overweight or obese, she pointed out, and excess weight can translate into pregnancy complications and risks to the fetus.

But actual differences in ART outcomes may not warrant drastic steps, such as denying in vitro fertilization (IVF) treatment for women who are overweight, she argued.

©dblight/iStockphoto.com
Although being obese can cause pregnancy complications, overweight women should not be denied access to assisted reproductive techniques.

"If you look at the abstracts of all these papers, they list these huge significance factors, but if you’re looking at tens of thousands of cycles, a very small reduction in pregnancy rate is highly, highly significant," said Dr. Cedars, professor of obstetrics, gynecology, and reproductive sciences and director of the division of reproductive endocrinology and infertility at the University of California, San Francisco.

For example, she referenced a national study based on Society for Assisted Reproductive Technology data that documented significantly more cancelled treatment cycles because of a low response rate and increased odds of treatment failure among heavier ART patients (Fertil. Steril. 2011;96:820-5). In that study, the greatest decrements in ART success were among women with BMIs of 50 kg/m2 or higher.

At that BMI (translating into a woman about 5 feet 5 inches tall who weighs more than 300 pounds), pregnancy rates in the SART database averaged 36%, compared with 43% for those with a BMI of 18.5 kg/m2 (about 5 foot 5 and 110 pounds).

For women with BMIs between 30 and 35 kg/m2 (5 foot 5 and 180-210 pounds), the pregnancy rate was 41%, Dr. Cedars reported at a conference on IVF and embryo transfer, sponsored by the University of California, Los Angeles.

This study and others like it have prompted some IVF programs to refuse treatment to women with BMIs of 30 kg/m2 and above, according to Dr. Cedars.

But the disparity in pregnancy rates between women with BMIs of 30 vs. 18.5 is, in fact, about the same as the disparity between Asian women compared with white women following ART, she noted.

"Are you going to refuse to treat Asians because their success rate is lower?" she asked rhetorically.

Obesity factors related to ART success take on less significance in older patients, she noted, "because obviously the strongest driver in your older patients is age.

"Age trumps everything, so if your plan is going to make these women lose weight, the time that might take them if they’re older is going to be way more significant than any potential benefit in terms of weight loss," she said.

Based on small studies, acute weight loss appears to reduce fertilization rates rather than improve the odds of ART success, said Dr. Cedars.

She reported no relevant financial relationships.

SANTA BARBARA, CALIF. – Lower-than-average clinical pregnancy rates among obese women undergoing assisted reproductive techniques may be less relevant clinically than they seem at first blush, according to Dr. Marcelle I. Cedars.

A third of American women today are overweight or obese, she pointed out, and excess weight can translate into pregnancy complications and risks to the fetus.

But actual differences in ART outcomes may not warrant drastic steps, such as denying in vitro fertilization (IVF) treatment for women who are overweight, she argued.

©dblight/iStockphoto.com
Although being obese can cause pregnancy complications, overweight women should not be denied access to assisted reproductive techniques.

"If you look at the abstracts of all these papers, they list these huge significance factors, but if you’re looking at tens of thousands of cycles, a very small reduction in pregnancy rate is highly, highly significant," said Dr. Cedars, professor of obstetrics, gynecology, and reproductive sciences and director of the division of reproductive endocrinology and infertility at the University of California, San Francisco.

For example, she referenced a national study based on Society for Assisted Reproductive Technology data that documented significantly more cancelled treatment cycles because of a low response rate and increased odds of treatment failure among heavier ART patients (Fertil. Steril. 2011;96:820-5). In that study, the greatest decrements in ART success were among women with BMIs of 50 kg/m2 or higher.

At that BMI (translating into a woman about 5 feet 5 inches tall who weighs more than 300 pounds), pregnancy rates in the SART database averaged 36%, compared with 43% for those with a BMI of 18.5 kg/m2 (about 5 foot 5 and 110 pounds).

For women with BMIs between 30 and 35 kg/m2 (5 foot 5 and 180-210 pounds), the pregnancy rate was 41%, Dr. Cedars reported at a conference on IVF and embryo transfer, sponsored by the University of California, Los Angeles.

This study and others like it have prompted some IVF programs to refuse treatment to women with BMIs of 30 kg/m2 and above, according to Dr. Cedars.

But the disparity in pregnancy rates between women with BMIs of 30 vs. 18.5 is, in fact, about the same as the disparity between Asian women compared with white women following ART, she noted.

"Are you going to refuse to treat Asians because their success rate is lower?" she asked rhetorically.

Obesity factors related to ART success take on less significance in older patients, she noted, "because obviously the strongest driver in your older patients is age.

"Age trumps everything, so if your plan is going to make these women lose weight, the time that might take them if they’re older is going to be way more significant than any potential benefit in terms of weight loss," she said.

Based on small studies, acute weight loss appears to reduce fertilization rates rather than improve the odds of ART success, said Dr. Cedars.

She reported no relevant financial relationships.

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Complacency Is the Enemy in Transvaginal Follicle Aspiration

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SANTA BARBARA, CALIF. – A third of the audience attending a specialty conference on in vitro fertilization reported hospitalizing a patient for pelvic infection following transvaginal follicle aspiration, and the same percentage reported performing a laparoscopy or laparotomy for bleeding following the procedure.

Bowel and ureteral injuries and retroperitoneal hematomas also were reported, but at far lower rates, Dr. David R. Meldrum said at a conference on in vitro fertilization and embryo transfer sponsored by the University of California, Los Angeles.

While the instant survey was unscientific and represented complications only among specialists who perform many transvaginal procedures, the high rate of serious complications was noteworthy, said Dr. Meldrum, scientific director of Reproductive Partners Medical Group in Redondo Beach, Calif., and director of the annual course on in vitro fertilization and embryo transfer.

"I’ve talked to several people who feel that complications of this procedure are underreported," he said.

"The last thing you want to be is complacent," Dr. Meldrum continued. "As a pilot, I know ... if you ever get complacent about something you should be paying maximal attention to," it will "bite you in the bottom."

Dr. Meldrum noted that transvaginal oocyte retrieval is highly efficacious and generally well tolerated under intravenous sedation. It is not, however, a risk-free procedure.

To reduce the potential for complications, he recommended using a 16- or 17-gauge needle with a very sharp tip and rinsing both the needles and collection tubing before use.

The ovary should be positioned very close to the transducer. Use "firm, constant pressure" of the probe, abdominal pressure, and a tenaculum, he suggested.

During the procedure, the needle should be rotated during movement to avoid bending the needle in any direction.

The ovary should be entered high, away from lower structures. "Don’t have a hint of anything between the ovary and the posterior pelvic wall," he said. In case of positioning difficulties, "keep in mind you can come across from the other side."

"Keep the needle tip well visualized and within the ovary," he said.

Dr. Meldrum reminded the audience that retroperitoneal bleeding can usually be managed by pressure from above when it is recognized during a procedure, but that symptoms may develop hours after the procedure. Abscesses may present up to 6 weeks following a transvaginal follicle aspiration.

Even during normal, successful aspirations, severe pain may occur during the procedure and for several days afterward, in a small percentage of patients.

Dr. Meldrum noted that Tylenol with codeine, a commonly prescribed analgesic, will be ineffective in approximately 1 of 10 patients who don’t metabolize codeine.

He reported that he had no relevant conflicts of interest.

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SANTA BARBARA, CALIF. – A third of the audience attending a specialty conference on in vitro fertilization reported hospitalizing a patient for pelvic infection following transvaginal follicle aspiration, and the same percentage reported performing a laparoscopy or laparotomy for bleeding following the procedure.

Bowel and ureteral injuries and retroperitoneal hematomas also were reported, but at far lower rates, Dr. David R. Meldrum said at a conference on in vitro fertilization and embryo transfer sponsored by the University of California, Los Angeles.

While the instant survey was unscientific and represented complications only among specialists who perform many transvaginal procedures, the high rate of serious complications was noteworthy, said Dr. Meldrum, scientific director of Reproductive Partners Medical Group in Redondo Beach, Calif., and director of the annual course on in vitro fertilization and embryo transfer.

"I’ve talked to several people who feel that complications of this procedure are underreported," he said.

"The last thing you want to be is complacent," Dr. Meldrum continued. "As a pilot, I know ... if you ever get complacent about something you should be paying maximal attention to," it will "bite you in the bottom."

Dr. Meldrum noted that transvaginal oocyte retrieval is highly efficacious and generally well tolerated under intravenous sedation. It is not, however, a risk-free procedure.

To reduce the potential for complications, he recommended using a 16- or 17-gauge needle with a very sharp tip and rinsing both the needles and collection tubing before use.

The ovary should be positioned very close to the transducer. Use "firm, constant pressure" of the probe, abdominal pressure, and a tenaculum, he suggested.

During the procedure, the needle should be rotated during movement to avoid bending the needle in any direction.

The ovary should be entered high, away from lower structures. "Don’t have a hint of anything between the ovary and the posterior pelvic wall," he said. In case of positioning difficulties, "keep in mind you can come across from the other side."

"Keep the needle tip well visualized and within the ovary," he said.

Dr. Meldrum reminded the audience that retroperitoneal bleeding can usually be managed by pressure from above when it is recognized during a procedure, but that symptoms may develop hours after the procedure. Abscesses may present up to 6 weeks following a transvaginal follicle aspiration.

Even during normal, successful aspirations, severe pain may occur during the procedure and for several days afterward, in a small percentage of patients.

Dr. Meldrum noted that Tylenol with codeine, a commonly prescribed analgesic, will be ineffective in approximately 1 of 10 patients who don’t metabolize codeine.

He reported that he had no relevant conflicts of interest.

SANTA BARBARA, CALIF. – A third of the audience attending a specialty conference on in vitro fertilization reported hospitalizing a patient for pelvic infection following transvaginal follicle aspiration, and the same percentage reported performing a laparoscopy or laparotomy for bleeding following the procedure.

Bowel and ureteral injuries and retroperitoneal hematomas also were reported, but at far lower rates, Dr. David R. Meldrum said at a conference on in vitro fertilization and embryo transfer sponsored by the University of California, Los Angeles.

While the instant survey was unscientific and represented complications only among specialists who perform many transvaginal procedures, the high rate of serious complications was noteworthy, said Dr. Meldrum, scientific director of Reproductive Partners Medical Group in Redondo Beach, Calif., and director of the annual course on in vitro fertilization and embryo transfer.

"I’ve talked to several people who feel that complications of this procedure are underreported," he said.

"The last thing you want to be is complacent," Dr. Meldrum continued. "As a pilot, I know ... if you ever get complacent about something you should be paying maximal attention to," it will "bite you in the bottom."

Dr. Meldrum noted that transvaginal oocyte retrieval is highly efficacious and generally well tolerated under intravenous sedation. It is not, however, a risk-free procedure.

To reduce the potential for complications, he recommended using a 16- or 17-gauge needle with a very sharp tip and rinsing both the needles and collection tubing before use.

The ovary should be positioned very close to the transducer. Use "firm, constant pressure" of the probe, abdominal pressure, and a tenaculum, he suggested.

During the procedure, the needle should be rotated during movement to avoid bending the needle in any direction.

The ovary should be entered high, away from lower structures. "Don’t have a hint of anything between the ovary and the posterior pelvic wall," he said. In case of positioning difficulties, "keep in mind you can come across from the other side."

"Keep the needle tip well visualized and within the ovary," he said.

Dr. Meldrum reminded the audience that retroperitoneal bleeding can usually be managed by pressure from above when it is recognized during a procedure, but that symptoms may develop hours after the procedure. Abscesses may present up to 6 weeks following a transvaginal follicle aspiration.

Even during normal, successful aspirations, severe pain may occur during the procedure and for several days afterward, in a small percentage of patients.

Dr. Meldrum noted that Tylenol with codeine, a commonly prescribed analgesic, will be ineffective in approximately 1 of 10 patients who don’t metabolize codeine.

He reported that he had no relevant conflicts of interest.

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Psychiatric Comorbidity Should Not Forestall Cancer Treatment

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MIAMI – Serious psychiatric comorbidities should not deprive cancer patients of life-salvaging or life-enriching therapies, according to two psychiatrists who have helped such patients to achieve successful outcomes with treatment for their physical and mental disorders.

Aggressive psychiatric treatment preserved patients’ eligibility for bone marrow transplantation (BMT) and allowed terminally ill patients to "participate in the important process of saying goodbye," the clinicians reported during separate presentations at the annual meeting of the American Psychosocial Oncology Society.

Bone Marrow Transplantation Feasible

Dr. Isabel Schuermeyer, director of psycho-oncology at the Cleveland Clinic, underscored her contention that even suicidal ideation should not, in most cases, be a contraindication for BMT. She described the case of a 55-year-old mantle cell lymphoma patient with a lengthy history of depression who developed myelodysplastic syndrome following an initial autologous BMT.

"I think there should be no psychiatric contraindication to BMT."

While under consideration for repeat BMT, he developed suicidal ideation, including formulating a plan to drive a car into a wall or poison himself with carbon monoxide. Intensive, collaborative management and a brief inpatient psychiatry admission combined to stabilize the patient on mirtazapine (Remeron) and clonazepam within 2 weeks, she reported. Although rapidly progressive medical complications precluded a second BMT, his psychiatric condition became stable.

A second psychiatric intervention involved a 57-year-old woman with multiple myeloma who drove 1,000 miles without stopping, just to make an appointment at the Cleveland Clinic. This followed her firing of four oncologists in 6 months in her city of origin. Relevant history included an early suicide attempt, alcohol abuse, and anxiety.

On examination, the patient exhibited racing thoughts, a diminished need for sleep, and excessive activity and distractibility. With close follow-up by the psychosocial oncology team and initiation of quetiapine (Seroquel) therapy, the patient’s hypomanic symptoms soon abated, and she was able to safely undergo a transplant.

"She actually did really well and had some insight," Dr. Schuermeyer said in an interview. "She was sleeping 8-9 hours a night."

The literature on psychiatric suitability for BMT is sparse, she noted. In 2006, Foster and colleagues reported (Bone Marrow Transplant. 2006:37:223-8) that nearly 90% of BMT professionals would not transplant a patient with suicidal ideation.

A small case series (Psychiatry Clin. Neurosci. 2003:57:311-5) reported that six of seven patients with psychiatric illnesses were able to undergo BMT with the exception of one patient with borderline personality disorder.

There is a widespread belief that patients with a psychiatric history may not be good candidates for BMT due to concerns about adherence, Dr. Schuermeyer noted. "Everyone wants great outcomes with BMT," she said in an interview.

However, her belief, grounded in experience, is that close collaboration and competent mental health care can overcome psychiatric obstacles in the vast majority of cases. "I think there should be no psychiatric contraindication to BMT. At the end of the day, this is a lifesaving treatment," she said.

Unlike in solid organ transplantation, years of compliance are not required. "Let’s just save peoples’ lives. Let’s be aggressive and work together as a team," she said.

Depression Eased by ECT

Dr. Carlos G. Fernandez-Robles of the psychiatry oncology service at the Massachusetts General Hospital Cancer Center in Boston advocated aggressive treatment of another sort. Using three clinical cases as examples, he outlined the effective use of electroconvulsive therapy in cancer patients with profound treatment-resistant depression that included catatonic symptoms.

Dr. Carlos G. Fernandez-Robles

Catatonia, he said, is an uncommon entity in general, and even more so in cancer patients; it is likely often unrecognized, however, and can be a manifestation of paraneoplastic encephalopathy, CNS chemotherapy toxicity, or psychiatric in origin.

In one such patient, a 40-year-woman with unresectable T4bN2cM0 maxillary adenoid cystic carcinoma treated with radiation and combination chemotherapy, was admitted to the hospital for failure to thrive, weight loss, and immobility. On examination, she demonstrated mutism, posturing, limb rigidity and mild waxy flexibility, gegenhalten hypertonia, and grasp reflex.

While lorazepam (Ativan) 2 mg IV temporarily resolved her symptoms, the team was unable to achieve any sustained response to psychopharmacologic treatment. The patient responded fully to six treatments with electroconvulsive therapy and was able to complete radiation and chemotherapy, Dr. Fernandez-Robles said.

A second patient with profound depression had complete response to six rounds of ECT after he failed to respond to a variety of medications following resection of right temporal lesions and an anterior temporal lobectomy for multicentric glioblastoma multiforme.

Very few studies have been published of ECT in cancer patients, in large measure because of a stigma not only among members of the general public, but in medical training as well, Dr. Fernandez-Robles said.

 

 

"Jack Nicholson did for shock therapy what 'Jaws' did for sharks," he wryly paraphrased British psychiatrist Susan Benbow as saying in an allusion to the depiction of ECT in the movie "One Flew Over the Cuckoo’s Nest."

In practice, ECT can reduce emotional suffering and physical pain and can "restore capacity for enjoyment of whatever life remains to be lived," said Dr. Fernandez-Robles.

For terminally ill patients with unremitting depression, it offers hope for engagement "in the important process of saying good-byes and wrapping things up."

Adverse effects can include nausea, headache, postictal delirium, cardiovascular complications, prolonged apnea, and well-known effects on anterograde and recent retrograde memory. Indeed, patients described by Dr. Fernandez-Robles did experience memory-related side effects.

Nonetheless, he said each of the patients had "clear-cut" indications for ECT and their quality of life improved dramatically as a result of the therapy.

"I am really interested in ... the impact of serious mental illness on the quality of care we give to our patients," he said following the meeting.

Neither presenter disclosed any relevant conflicts of interest.

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MIAMI – Serious psychiatric comorbidities should not deprive cancer patients of life-salvaging or life-enriching therapies, according to two psychiatrists who have helped such patients to achieve successful outcomes with treatment for their physical and mental disorders.

Aggressive psychiatric treatment preserved patients’ eligibility for bone marrow transplantation (BMT) and allowed terminally ill patients to "participate in the important process of saying goodbye," the clinicians reported during separate presentations at the annual meeting of the American Psychosocial Oncology Society.

Bone Marrow Transplantation Feasible

Dr. Isabel Schuermeyer, director of psycho-oncology at the Cleveland Clinic, underscored her contention that even suicidal ideation should not, in most cases, be a contraindication for BMT. She described the case of a 55-year-old mantle cell lymphoma patient with a lengthy history of depression who developed myelodysplastic syndrome following an initial autologous BMT.

"I think there should be no psychiatric contraindication to BMT."

While under consideration for repeat BMT, he developed suicidal ideation, including formulating a plan to drive a car into a wall or poison himself with carbon monoxide. Intensive, collaborative management and a brief inpatient psychiatry admission combined to stabilize the patient on mirtazapine (Remeron) and clonazepam within 2 weeks, she reported. Although rapidly progressive medical complications precluded a second BMT, his psychiatric condition became stable.

A second psychiatric intervention involved a 57-year-old woman with multiple myeloma who drove 1,000 miles without stopping, just to make an appointment at the Cleveland Clinic. This followed her firing of four oncologists in 6 months in her city of origin. Relevant history included an early suicide attempt, alcohol abuse, and anxiety.

On examination, the patient exhibited racing thoughts, a diminished need for sleep, and excessive activity and distractibility. With close follow-up by the psychosocial oncology team and initiation of quetiapine (Seroquel) therapy, the patient’s hypomanic symptoms soon abated, and she was able to safely undergo a transplant.

"She actually did really well and had some insight," Dr. Schuermeyer said in an interview. "She was sleeping 8-9 hours a night."

The literature on psychiatric suitability for BMT is sparse, she noted. In 2006, Foster and colleagues reported (Bone Marrow Transplant. 2006:37:223-8) that nearly 90% of BMT professionals would not transplant a patient with suicidal ideation.

A small case series (Psychiatry Clin. Neurosci. 2003:57:311-5) reported that six of seven patients with psychiatric illnesses were able to undergo BMT with the exception of one patient with borderline personality disorder.

There is a widespread belief that patients with a psychiatric history may not be good candidates for BMT due to concerns about adherence, Dr. Schuermeyer noted. "Everyone wants great outcomes with BMT," she said in an interview.

However, her belief, grounded in experience, is that close collaboration and competent mental health care can overcome psychiatric obstacles in the vast majority of cases. "I think there should be no psychiatric contraindication to BMT. At the end of the day, this is a lifesaving treatment," she said.

Unlike in solid organ transplantation, years of compliance are not required. "Let’s just save peoples’ lives. Let’s be aggressive and work together as a team," she said.

Depression Eased by ECT

Dr. Carlos G. Fernandez-Robles of the psychiatry oncology service at the Massachusetts General Hospital Cancer Center in Boston advocated aggressive treatment of another sort. Using three clinical cases as examples, he outlined the effective use of electroconvulsive therapy in cancer patients with profound treatment-resistant depression that included catatonic symptoms.

Dr. Carlos G. Fernandez-Robles

Catatonia, he said, is an uncommon entity in general, and even more so in cancer patients; it is likely often unrecognized, however, and can be a manifestation of paraneoplastic encephalopathy, CNS chemotherapy toxicity, or psychiatric in origin.

In one such patient, a 40-year-woman with unresectable T4bN2cM0 maxillary adenoid cystic carcinoma treated with radiation and combination chemotherapy, was admitted to the hospital for failure to thrive, weight loss, and immobility. On examination, she demonstrated mutism, posturing, limb rigidity and mild waxy flexibility, gegenhalten hypertonia, and grasp reflex.

While lorazepam (Ativan) 2 mg IV temporarily resolved her symptoms, the team was unable to achieve any sustained response to psychopharmacologic treatment. The patient responded fully to six treatments with electroconvulsive therapy and was able to complete radiation and chemotherapy, Dr. Fernandez-Robles said.

A second patient with profound depression had complete response to six rounds of ECT after he failed to respond to a variety of medications following resection of right temporal lesions and an anterior temporal lobectomy for multicentric glioblastoma multiforme.

Very few studies have been published of ECT in cancer patients, in large measure because of a stigma not only among members of the general public, but in medical training as well, Dr. Fernandez-Robles said.

 

 

"Jack Nicholson did for shock therapy what 'Jaws' did for sharks," he wryly paraphrased British psychiatrist Susan Benbow as saying in an allusion to the depiction of ECT in the movie "One Flew Over the Cuckoo’s Nest."

In practice, ECT can reduce emotional suffering and physical pain and can "restore capacity for enjoyment of whatever life remains to be lived," said Dr. Fernandez-Robles.

For terminally ill patients with unremitting depression, it offers hope for engagement "in the important process of saying good-byes and wrapping things up."

Adverse effects can include nausea, headache, postictal delirium, cardiovascular complications, prolonged apnea, and well-known effects on anterograde and recent retrograde memory. Indeed, patients described by Dr. Fernandez-Robles did experience memory-related side effects.

Nonetheless, he said each of the patients had "clear-cut" indications for ECT and their quality of life improved dramatically as a result of the therapy.

"I am really interested in ... the impact of serious mental illness on the quality of care we give to our patients," he said following the meeting.

Neither presenter disclosed any relevant conflicts of interest.

MIAMI – Serious psychiatric comorbidities should not deprive cancer patients of life-salvaging or life-enriching therapies, according to two psychiatrists who have helped such patients to achieve successful outcomes with treatment for their physical and mental disorders.

Aggressive psychiatric treatment preserved patients’ eligibility for bone marrow transplantation (BMT) and allowed terminally ill patients to "participate in the important process of saying goodbye," the clinicians reported during separate presentations at the annual meeting of the American Psychosocial Oncology Society.

Bone Marrow Transplantation Feasible

Dr. Isabel Schuermeyer, director of psycho-oncology at the Cleveland Clinic, underscored her contention that even suicidal ideation should not, in most cases, be a contraindication for BMT. She described the case of a 55-year-old mantle cell lymphoma patient with a lengthy history of depression who developed myelodysplastic syndrome following an initial autologous BMT.

"I think there should be no psychiatric contraindication to BMT."

While under consideration for repeat BMT, he developed suicidal ideation, including formulating a plan to drive a car into a wall or poison himself with carbon monoxide. Intensive, collaborative management and a brief inpatient psychiatry admission combined to stabilize the patient on mirtazapine (Remeron) and clonazepam within 2 weeks, she reported. Although rapidly progressive medical complications precluded a second BMT, his psychiatric condition became stable.

A second psychiatric intervention involved a 57-year-old woman with multiple myeloma who drove 1,000 miles without stopping, just to make an appointment at the Cleveland Clinic. This followed her firing of four oncologists in 6 months in her city of origin. Relevant history included an early suicide attempt, alcohol abuse, and anxiety.

On examination, the patient exhibited racing thoughts, a diminished need for sleep, and excessive activity and distractibility. With close follow-up by the psychosocial oncology team and initiation of quetiapine (Seroquel) therapy, the patient’s hypomanic symptoms soon abated, and she was able to safely undergo a transplant.

"She actually did really well and had some insight," Dr. Schuermeyer said in an interview. "She was sleeping 8-9 hours a night."

The literature on psychiatric suitability for BMT is sparse, she noted. In 2006, Foster and colleagues reported (Bone Marrow Transplant. 2006:37:223-8) that nearly 90% of BMT professionals would not transplant a patient with suicidal ideation.

A small case series (Psychiatry Clin. Neurosci. 2003:57:311-5) reported that six of seven patients with psychiatric illnesses were able to undergo BMT with the exception of one patient with borderline personality disorder.

There is a widespread belief that patients with a psychiatric history may not be good candidates for BMT due to concerns about adherence, Dr. Schuermeyer noted. "Everyone wants great outcomes with BMT," she said in an interview.

However, her belief, grounded in experience, is that close collaboration and competent mental health care can overcome psychiatric obstacles in the vast majority of cases. "I think there should be no psychiatric contraindication to BMT. At the end of the day, this is a lifesaving treatment," she said.

Unlike in solid organ transplantation, years of compliance are not required. "Let’s just save peoples’ lives. Let’s be aggressive and work together as a team," she said.

Depression Eased by ECT

Dr. Carlos G. Fernandez-Robles of the psychiatry oncology service at the Massachusetts General Hospital Cancer Center in Boston advocated aggressive treatment of another sort. Using three clinical cases as examples, he outlined the effective use of electroconvulsive therapy in cancer patients with profound treatment-resistant depression that included catatonic symptoms.

Dr. Carlos G. Fernandez-Robles

Catatonia, he said, is an uncommon entity in general, and even more so in cancer patients; it is likely often unrecognized, however, and can be a manifestation of paraneoplastic encephalopathy, CNS chemotherapy toxicity, or psychiatric in origin.

In one such patient, a 40-year-woman with unresectable T4bN2cM0 maxillary adenoid cystic carcinoma treated with radiation and combination chemotherapy, was admitted to the hospital for failure to thrive, weight loss, and immobility. On examination, she demonstrated mutism, posturing, limb rigidity and mild waxy flexibility, gegenhalten hypertonia, and grasp reflex.

While lorazepam (Ativan) 2 mg IV temporarily resolved her symptoms, the team was unable to achieve any sustained response to psychopharmacologic treatment. The patient responded fully to six treatments with electroconvulsive therapy and was able to complete radiation and chemotherapy, Dr. Fernandez-Robles said.

A second patient with profound depression had complete response to six rounds of ECT after he failed to respond to a variety of medications following resection of right temporal lesions and an anterior temporal lobectomy for multicentric glioblastoma multiforme.

Very few studies have been published of ECT in cancer patients, in large measure because of a stigma not only among members of the general public, but in medical training as well, Dr. Fernandez-Robles said.

 

 

"Jack Nicholson did for shock therapy what 'Jaws' did for sharks," he wryly paraphrased British psychiatrist Susan Benbow as saying in an allusion to the depiction of ECT in the movie "One Flew Over the Cuckoo’s Nest."

In practice, ECT can reduce emotional suffering and physical pain and can "restore capacity for enjoyment of whatever life remains to be lived," said Dr. Fernandez-Robles.

For terminally ill patients with unremitting depression, it offers hope for engagement "in the important process of saying good-byes and wrapping things up."

Adverse effects can include nausea, headache, postictal delirium, cardiovascular complications, prolonged apnea, and well-known effects on anterograde and recent retrograde memory. Indeed, patients described by Dr. Fernandez-Robles did experience memory-related side effects.

Nonetheless, he said each of the patients had "clear-cut" indications for ECT and their quality of life improved dramatically as a result of the therapy.

"I am really interested in ... the impact of serious mental illness on the quality of care we give to our patients," he said following the meeting.

Neither presenter disclosed any relevant conflicts of interest.

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Insomnia Linked to Chemo, Hormone Therapy

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MIAMI – Chemotherapy and hormone therapy – but not radiation therapy – were associated with insomnia in a population study that tracked sleep patterns in nearly 1,000 cancer patients for 18 months after recruitment early in the course of their disease.

Nausea, other digestive symptoms, night sweats, and pain were all associated with disturbed sleep in the study of 962 patients diagnosed with nonmetastatic cancer and recruited by the Laval University Cancer Research Center in Quebec. Of these, many patients did not receive adjuvant therapy, while some received a combination of therapies. The analysis included 224 patients who received chemotherapy, 428 patients who had radiotherapy, and 291 who received hormone therapy.

Courtesy Dr. Josée Savard
Dr. Josée Savard

The median age of the patients was 57 years, and nearly two-thirds were women. The most common cancer sites were breast (49%), prostate (27%), and gynecologic (12%).

A pronounced association between chemotherapy and insomnia was best explained by nausea (P less than .001), but also by digestive symptoms, night sweats, and pain, Dr. Josée Savard, professor of psychology at the university, reported at the annual conference of the American Psychosocial Oncology Society.

Night sweats, on the other hand, had the most pronounced effect (P less than.001) on insomnia in patients undergoing hormone therapy. Pain was also a highly significant contributor to sleeplessness in hormone-treated patients, said Dr. Savard.

In a previous study of the same cohort, she and her associates reported a very high rate of insomnia (59%) at baseline, the day of each patient’s preoperative visit, before active treatment had been initiated (J. Clin. Oncol. 2011;29:3580-6).

About 1 in 7 patients experienced insomnia for the first time during cancer treatment, and nearly 20% experienced a relapse of clinically diagnosable insomnia that had occurred earlier in their lives. Over time, insomnia declined, but even at the final, 18-month time point of the natural history study, 36% of patients still reported insomnia.

Dr. Savard found that cancer patients most at risk for insomnia were women, younger patients, and those patients who had a hyperarousability trait or a personal or family history of insomnia or a psychiatric disorder. Precipitating factors included hospitalization and cancer treatment.

She cited many potential contributors to insomnia in cancer patients undergoing treatment, from anticipatory anxiety to daytime napping, which might reduce exposure to sunlight and disrupt the sleep-wake cycle.

The current study was designed to tease out the effect of various cancer treatments and treatment-specific symptoms on insomnia.

Asked why radiation therapy was not associated with insomnia, Dr. Savard suggested it has fewer side effects that might affect sleep – except in certain subsamples.

"For instance, radiation therapy for prostate cancer can lead to urinary incontinence, which may disturb sleep when occurring during nighttime. We recently found evidence for such an effect in a different longitudinal study conducted in prostate cancer patients only. It is possible that this effect was blurred in the present study because various cancer types were pooled together," she said. "Note also that the results are in the same direction for radiation therapy, although the association is not significant," she added.

Funding for the study was through the Canadian Institutes of Health Research. None of the investigators had relevant financial disclosures.

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MIAMI – Chemotherapy and hormone therapy – but not radiation therapy – were associated with insomnia in a population study that tracked sleep patterns in nearly 1,000 cancer patients for 18 months after recruitment early in the course of their disease.

Nausea, other digestive symptoms, night sweats, and pain were all associated with disturbed sleep in the study of 962 patients diagnosed with nonmetastatic cancer and recruited by the Laval University Cancer Research Center in Quebec. Of these, many patients did not receive adjuvant therapy, while some received a combination of therapies. The analysis included 224 patients who received chemotherapy, 428 patients who had radiotherapy, and 291 who received hormone therapy.

Courtesy Dr. Josée Savard
Dr. Josée Savard

The median age of the patients was 57 years, and nearly two-thirds were women. The most common cancer sites were breast (49%), prostate (27%), and gynecologic (12%).

A pronounced association between chemotherapy and insomnia was best explained by nausea (P less than .001), but also by digestive symptoms, night sweats, and pain, Dr. Josée Savard, professor of psychology at the university, reported at the annual conference of the American Psychosocial Oncology Society.

Night sweats, on the other hand, had the most pronounced effect (P less than.001) on insomnia in patients undergoing hormone therapy. Pain was also a highly significant contributor to sleeplessness in hormone-treated patients, said Dr. Savard.

In a previous study of the same cohort, she and her associates reported a very high rate of insomnia (59%) at baseline, the day of each patient’s preoperative visit, before active treatment had been initiated (J. Clin. Oncol. 2011;29:3580-6).

About 1 in 7 patients experienced insomnia for the first time during cancer treatment, and nearly 20% experienced a relapse of clinically diagnosable insomnia that had occurred earlier in their lives. Over time, insomnia declined, but even at the final, 18-month time point of the natural history study, 36% of patients still reported insomnia.

Dr. Savard found that cancer patients most at risk for insomnia were women, younger patients, and those patients who had a hyperarousability trait or a personal or family history of insomnia or a psychiatric disorder. Precipitating factors included hospitalization and cancer treatment.

She cited many potential contributors to insomnia in cancer patients undergoing treatment, from anticipatory anxiety to daytime napping, which might reduce exposure to sunlight and disrupt the sleep-wake cycle.

The current study was designed to tease out the effect of various cancer treatments and treatment-specific symptoms on insomnia.

Asked why radiation therapy was not associated with insomnia, Dr. Savard suggested it has fewer side effects that might affect sleep – except in certain subsamples.

"For instance, radiation therapy for prostate cancer can lead to urinary incontinence, which may disturb sleep when occurring during nighttime. We recently found evidence for such an effect in a different longitudinal study conducted in prostate cancer patients only. It is possible that this effect was blurred in the present study because various cancer types were pooled together," she said. "Note also that the results are in the same direction for radiation therapy, although the association is not significant," she added.

Funding for the study was through the Canadian Institutes of Health Research. None of the investigators had relevant financial disclosures.

MIAMI – Chemotherapy and hormone therapy – but not radiation therapy – were associated with insomnia in a population study that tracked sleep patterns in nearly 1,000 cancer patients for 18 months after recruitment early in the course of their disease.

Nausea, other digestive symptoms, night sweats, and pain were all associated with disturbed sleep in the study of 962 patients diagnosed with nonmetastatic cancer and recruited by the Laval University Cancer Research Center in Quebec. Of these, many patients did not receive adjuvant therapy, while some received a combination of therapies. The analysis included 224 patients who received chemotherapy, 428 patients who had radiotherapy, and 291 who received hormone therapy.

Courtesy Dr. Josée Savard
Dr. Josée Savard

The median age of the patients was 57 years, and nearly two-thirds were women. The most common cancer sites were breast (49%), prostate (27%), and gynecologic (12%).

A pronounced association between chemotherapy and insomnia was best explained by nausea (P less than .001), but also by digestive symptoms, night sweats, and pain, Dr. Josée Savard, professor of psychology at the university, reported at the annual conference of the American Psychosocial Oncology Society.

Night sweats, on the other hand, had the most pronounced effect (P less than.001) on insomnia in patients undergoing hormone therapy. Pain was also a highly significant contributor to sleeplessness in hormone-treated patients, said Dr. Savard.

In a previous study of the same cohort, she and her associates reported a very high rate of insomnia (59%) at baseline, the day of each patient’s preoperative visit, before active treatment had been initiated (J. Clin. Oncol. 2011;29:3580-6).

About 1 in 7 patients experienced insomnia for the first time during cancer treatment, and nearly 20% experienced a relapse of clinically diagnosable insomnia that had occurred earlier in their lives. Over time, insomnia declined, but even at the final, 18-month time point of the natural history study, 36% of patients still reported insomnia.

Dr. Savard found that cancer patients most at risk for insomnia were women, younger patients, and those patients who had a hyperarousability trait or a personal or family history of insomnia or a psychiatric disorder. Precipitating factors included hospitalization and cancer treatment.

She cited many potential contributors to insomnia in cancer patients undergoing treatment, from anticipatory anxiety to daytime napping, which might reduce exposure to sunlight and disrupt the sleep-wake cycle.

The current study was designed to tease out the effect of various cancer treatments and treatment-specific symptoms on insomnia.

Asked why radiation therapy was not associated with insomnia, Dr. Savard suggested it has fewer side effects that might affect sleep – except in certain subsamples.

"For instance, radiation therapy for prostate cancer can lead to urinary incontinence, which may disturb sleep when occurring during nighttime. We recently found evidence for such an effect in a different longitudinal study conducted in prostate cancer patients only. It is possible that this effect was blurred in the present study because various cancer types were pooled together," she said. "Note also that the results are in the same direction for radiation therapy, although the association is not significant," she added.

Funding for the study was through the Canadian Institutes of Health Research. None of the investigators had relevant financial disclosures.

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Major Finding: A pronounced association between chemotherapy and insomnia was best explained by nausea (P less than .001), but also by digestive symptoms, night sweats, and pain.

Data Source: Investigators conducted a population-based study of 962 patients with nonmetastatic cancer.

Disclosures: Funding for the study was through the Canadian Institutes of Health Research. None of the investigators had relevant financial disclosures.

Looks Aren’t Everything in Breast Reconstruction

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Looks Aren’t Everything in Breast Reconstruction
The surgeon-patient relationship can be critical to whether the procedure is perceived as successful.

Before-and-after photographs are the stock in trade of house painters, auto repair shops, and, yes, plastic and reconstructive surgeons. But a new study may make the last group pause, since it hints that far more is at play in breast cancer patients’ definition of “successful’’ breast reconstruction surgery than how their breasts appear.

The study from Liverpool, England (J Plast Reconstr Aesthet Surg (2012): doi:10.1016/j.bjps.2012.03.005) sidestepped traditional measures used to evaluate outcomes of aesthetic breast surgery and instead asked open-ended questions of survivors who had undergone reconstruction 1-8 years previously.

What the researchers discovered, not surprisingly, is that reconstruction patients are quite unlike cosmetic surgery patients in fundamental and important ways.

©Lilli Day/iStockphoto.com
When it comes to breast reconstruction, women and their surgeons have different definitions of what defines a "successful" procedure.

Of particular interest in the initial study cohort of 95 patients were 38 whose subjective evaluations of their surgical results completely contradicted objective ratings of cosmesis, the final appearance of the reconstructed breast(s) by surgeons and surgical nurses.

Incredibly, the association between women’s assessments and objective cosmesis ratings failed even to reach statistical significance.

In a structured data analysis of themes that arose in open-ended interviews with 27 of the survivors, the strongest link to women’s satisfaction with the procedure was the surgeon-patient relationship.

Next came the significance of reconstruction in what patients saw as the “completion of the cancer journey,” the authors wrote. “Patients who focused on this were positive about reconstruction that practitioners had rated negatively.”

A previous study asked patients about scarring, finding a correlation between scarring and dissatisfaction with reconstruction. But scarring wasn’t even a blip on the radar when, quoting from the Liverpool study, “we allowed patients to tell us what mattered to them rather than imposing our preconceptions.”

“It seems that surgeons and patients normally ‘talk different languages’; one technical and the other drawing more from relationships and patients’ sense of how normal they feel and appear and from their sense that reconstruction completes their cancer journey,” the investigators concluded. “In preoperative consultations, surgeons concentrate almost exclusively on the technical and cosmetic aspects of reconstruction: what can be achieved and what complications can occur.”

Of course, women who struggled with complications tended to factor that in to their assessments of their results, even if their final cosmetic outcome was considered by surgeons to be excellent.

Others were disappointed despite what seemed to surgeons to be  excellent cosmetic results because, as one said, “I was expecting to feel feminine again, but I don’t, I don’t at all.”

What is perhaps even more interesting is to eavesdrop on the comments of women whose surgeons judged their cosmetic result to be poor.

Said one, “I had a really good relationship with (the surgeon) and I just found it so reassuring to see her. That was part of the whole thing really. She was just so positive, and so, well, just understanding I think … I was really glad that I had chosen that form of reconstruction because I had this regular contact with her.”

Said another, who felt “normal” despite what her surgeon considered to be a poor result: “If I didn’t have it done, I wouldn’t have felt normal at all. It would always remind me of what had happened.”

A highly complex patient-surgeon dance occurs when breast surgery is performed for more than cosmetic reasons, the study found.

One woman, disappointed with the way her reconstructed breast fit in a bra, could not bring herself to voice her concern with the surgeon she credited with saving her life.

“It’s very difficult to come face to face with somebody who says, ‘You’ve had cancer but we can get rid of it,’ and does their best… without seeming ungrateful,” she said, tearfully.

The study concludes with a fascinating discussion about the potential clinical implications of the findings.

Considering the profound influence of the patient-surgeon relationship on these particular patients, the investigators offer a cautionary suggestion to avoid being overly effusive about the cosmetic result they may see. Patients, they explain, may not necessarily share their enthusiasm, if they continue to struggle with the sense that cancer has marred their bodies, their sense of self, or their security in relationships.

“Both patient and surgeon have invested physically and emotionally in the procedure and it is difficult for either to admit to the other that it was “not worth it,” they note.

Women, on the other hand, who appear to be disproportionately pleased with the result of surgery that objectively achieved a poor result may simply be expressing relief and gratitude. “Their apparent satisfaction,” they wrote, “should not excuse poor surgical practice.” Rather, routine assessments of reconstructive practice should be made by objective sources, not simply patient report.

 

 

On the other hand, in individual patients, the objective in reconstructive surgery is patient satisfaction, they suggest. An unhappy patient might spur a conscientious surgeon to keep trying, perhaps through repeated procedures, to achieve a better result – a strategy that could be inappropriate and pointless considering that in some cases, “the reason for disappointment with reconstruction include many that the surgeon cannot influence surgically.”

It all suggests that communication between surgeons and reconstruction candidates and patients needs to be deep and candidly honest, informed by the emotional, sexual, and existential meaning the surgery holds.

In a word, it’s complicated.

Betsy Bates Freed, Psych.D., is a clinical psychologist in Santa Barbara, Calif., and a medical journalist.

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The surgeon-patient relationship can be critical to whether the procedure is perceived as successful.
The surgeon-patient relationship can be critical to whether the procedure is perceived as successful.

Before-and-after photographs are the stock in trade of house painters, auto repair shops, and, yes, plastic and reconstructive surgeons. But a new study may make the last group pause, since it hints that far more is at play in breast cancer patients’ definition of “successful’’ breast reconstruction surgery than how their breasts appear.

The study from Liverpool, England (J Plast Reconstr Aesthet Surg (2012): doi:10.1016/j.bjps.2012.03.005) sidestepped traditional measures used to evaluate outcomes of aesthetic breast surgery and instead asked open-ended questions of survivors who had undergone reconstruction 1-8 years previously.

What the researchers discovered, not surprisingly, is that reconstruction patients are quite unlike cosmetic surgery patients in fundamental and important ways.

©Lilli Day/iStockphoto.com
When it comes to breast reconstruction, women and their surgeons have different definitions of what defines a "successful" procedure.

Of particular interest in the initial study cohort of 95 patients were 38 whose subjective evaluations of their surgical results completely contradicted objective ratings of cosmesis, the final appearance of the reconstructed breast(s) by surgeons and surgical nurses.

Incredibly, the association between women’s assessments and objective cosmesis ratings failed even to reach statistical significance.

In a structured data analysis of themes that arose in open-ended interviews with 27 of the survivors, the strongest link to women’s satisfaction with the procedure was the surgeon-patient relationship.

Next came the significance of reconstruction in what patients saw as the “completion of the cancer journey,” the authors wrote. “Patients who focused on this were positive about reconstruction that practitioners had rated negatively.”

A previous study asked patients about scarring, finding a correlation between scarring and dissatisfaction with reconstruction. But scarring wasn’t even a blip on the radar when, quoting from the Liverpool study, “we allowed patients to tell us what mattered to them rather than imposing our preconceptions.”

“It seems that surgeons and patients normally ‘talk different languages’; one technical and the other drawing more from relationships and patients’ sense of how normal they feel and appear and from their sense that reconstruction completes their cancer journey,” the investigators concluded. “In preoperative consultations, surgeons concentrate almost exclusively on the technical and cosmetic aspects of reconstruction: what can be achieved and what complications can occur.”

Of course, women who struggled with complications tended to factor that in to their assessments of their results, even if their final cosmetic outcome was considered by surgeons to be excellent.

Others were disappointed despite what seemed to surgeons to be  excellent cosmetic results because, as one said, “I was expecting to feel feminine again, but I don’t, I don’t at all.”

What is perhaps even more interesting is to eavesdrop on the comments of women whose surgeons judged their cosmetic result to be poor.

Said one, “I had a really good relationship with (the surgeon) and I just found it so reassuring to see her. That was part of the whole thing really. She was just so positive, and so, well, just understanding I think … I was really glad that I had chosen that form of reconstruction because I had this regular contact with her.”

Said another, who felt “normal” despite what her surgeon considered to be a poor result: “If I didn’t have it done, I wouldn’t have felt normal at all. It would always remind me of what had happened.”

A highly complex patient-surgeon dance occurs when breast surgery is performed for more than cosmetic reasons, the study found.

One woman, disappointed with the way her reconstructed breast fit in a bra, could not bring herself to voice her concern with the surgeon she credited with saving her life.

“It’s very difficult to come face to face with somebody who says, ‘You’ve had cancer but we can get rid of it,’ and does their best… without seeming ungrateful,” she said, tearfully.

The study concludes with a fascinating discussion about the potential clinical implications of the findings.

Considering the profound influence of the patient-surgeon relationship on these particular patients, the investigators offer a cautionary suggestion to avoid being overly effusive about the cosmetic result they may see. Patients, they explain, may not necessarily share their enthusiasm, if they continue to struggle with the sense that cancer has marred their bodies, their sense of self, or their security in relationships.

“Both patient and surgeon have invested physically and emotionally in the procedure and it is difficult for either to admit to the other that it was “not worth it,” they note.

Women, on the other hand, who appear to be disproportionately pleased with the result of surgery that objectively achieved a poor result may simply be expressing relief and gratitude. “Their apparent satisfaction,” they wrote, “should not excuse poor surgical practice.” Rather, routine assessments of reconstructive practice should be made by objective sources, not simply patient report.

 

 

On the other hand, in individual patients, the objective in reconstructive surgery is patient satisfaction, they suggest. An unhappy patient might spur a conscientious surgeon to keep trying, perhaps through repeated procedures, to achieve a better result – a strategy that could be inappropriate and pointless considering that in some cases, “the reason for disappointment with reconstruction include many that the surgeon cannot influence surgically.”

It all suggests that communication between surgeons and reconstruction candidates and patients needs to be deep and candidly honest, informed by the emotional, sexual, and existential meaning the surgery holds.

In a word, it’s complicated.

Betsy Bates Freed, Psych.D., is a clinical psychologist in Santa Barbara, Calif., and a medical journalist.

Before-and-after photographs are the stock in trade of house painters, auto repair shops, and, yes, plastic and reconstructive surgeons. But a new study may make the last group pause, since it hints that far more is at play in breast cancer patients’ definition of “successful’’ breast reconstruction surgery than how their breasts appear.

The study from Liverpool, England (J Plast Reconstr Aesthet Surg (2012): doi:10.1016/j.bjps.2012.03.005) sidestepped traditional measures used to evaluate outcomes of aesthetic breast surgery and instead asked open-ended questions of survivors who had undergone reconstruction 1-8 years previously.

What the researchers discovered, not surprisingly, is that reconstruction patients are quite unlike cosmetic surgery patients in fundamental and important ways.

©Lilli Day/iStockphoto.com
When it comes to breast reconstruction, women and their surgeons have different definitions of what defines a "successful" procedure.

Of particular interest in the initial study cohort of 95 patients were 38 whose subjective evaluations of their surgical results completely contradicted objective ratings of cosmesis, the final appearance of the reconstructed breast(s) by surgeons and surgical nurses.

Incredibly, the association between women’s assessments and objective cosmesis ratings failed even to reach statistical significance.

In a structured data analysis of themes that arose in open-ended interviews with 27 of the survivors, the strongest link to women’s satisfaction with the procedure was the surgeon-patient relationship.

Next came the significance of reconstruction in what patients saw as the “completion of the cancer journey,” the authors wrote. “Patients who focused on this were positive about reconstruction that practitioners had rated negatively.”

A previous study asked patients about scarring, finding a correlation between scarring and dissatisfaction with reconstruction. But scarring wasn’t even a blip on the radar when, quoting from the Liverpool study, “we allowed patients to tell us what mattered to them rather than imposing our preconceptions.”

“It seems that surgeons and patients normally ‘talk different languages’; one technical and the other drawing more from relationships and patients’ sense of how normal they feel and appear and from their sense that reconstruction completes their cancer journey,” the investigators concluded. “In preoperative consultations, surgeons concentrate almost exclusively on the technical and cosmetic aspects of reconstruction: what can be achieved and what complications can occur.”

Of course, women who struggled with complications tended to factor that in to their assessments of their results, even if their final cosmetic outcome was considered by surgeons to be excellent.

Others were disappointed despite what seemed to surgeons to be  excellent cosmetic results because, as one said, “I was expecting to feel feminine again, but I don’t, I don’t at all.”

What is perhaps even more interesting is to eavesdrop on the comments of women whose surgeons judged their cosmetic result to be poor.

Said one, “I had a really good relationship with (the surgeon) and I just found it so reassuring to see her. That was part of the whole thing really. She was just so positive, and so, well, just understanding I think … I was really glad that I had chosen that form of reconstruction because I had this regular contact with her.”

Said another, who felt “normal” despite what her surgeon considered to be a poor result: “If I didn’t have it done, I wouldn’t have felt normal at all. It would always remind me of what had happened.”

A highly complex patient-surgeon dance occurs when breast surgery is performed for more than cosmetic reasons, the study found.

One woman, disappointed with the way her reconstructed breast fit in a bra, could not bring herself to voice her concern with the surgeon she credited with saving her life.

“It’s very difficult to come face to face with somebody who says, ‘You’ve had cancer but we can get rid of it,’ and does their best… without seeming ungrateful,” she said, tearfully.

The study concludes with a fascinating discussion about the potential clinical implications of the findings.

Considering the profound influence of the patient-surgeon relationship on these particular patients, the investigators offer a cautionary suggestion to avoid being overly effusive about the cosmetic result they may see. Patients, they explain, may not necessarily share their enthusiasm, if they continue to struggle with the sense that cancer has marred their bodies, their sense of self, or their security in relationships.

“Both patient and surgeon have invested physically and emotionally in the procedure and it is difficult for either to admit to the other that it was “not worth it,” they note.

Women, on the other hand, who appear to be disproportionately pleased with the result of surgery that objectively achieved a poor result may simply be expressing relief and gratitude. “Their apparent satisfaction,” they wrote, “should not excuse poor surgical practice.” Rather, routine assessments of reconstructive practice should be made by objective sources, not simply patient report.

 

 

On the other hand, in individual patients, the objective in reconstructive surgery is patient satisfaction, they suggest. An unhappy patient might spur a conscientious surgeon to keep trying, perhaps through repeated procedures, to achieve a better result – a strategy that could be inappropriate and pointless considering that in some cases, “the reason for disappointment with reconstruction include many that the surgeon cannot influence surgically.”

It all suggests that communication between surgeons and reconstruction candidates and patients needs to be deep and candidly honest, informed by the emotional, sexual, and existential meaning the surgery holds.

In a word, it’s complicated.

Betsy Bates Freed, Psych.D., is a clinical psychologist in Santa Barbara, Calif., and a medical journalist.

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Prostate Cancer Survivors Avoid Therapy for Sexual Side Effects

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MIAMI – Faced with erectile dysfunction following prostate cancer surgery, many men adopt an avoidant coping style that inadvertently interferes with rehabilitation efforts to spare them long-term sexual side effects.

"We have ways of helping men to get their erections back; that isn’t the issue," Christian J. Nelson, Ph.D., said at the annual conference of the American Psychosocial Oncology Society.

"The issue is, men avoid and drop out of rehabilitation programs."

Avoidance was one key theme raised by 35 men who had undergone radical prostatectomy for prostate cancer 2-3 years prior to being recruited into focus groups by Dr. Nelson and his colleagues as an initial step in devising a more effective approach to erectile dysfunction (ED) rehabilitation. He presented results of a systematic analysis of those themes at the meeting, and offered a preview of the ongoing study that resulted.

Dr. Nelson described a cycle in which men experienced frustration, shame, and embarrassment over ED during a sexual experience following surgery, then began avoiding intimate contact due to anxiety. Relationship issues, depression, and increased frustration often followed.

"It’s absolutely devastating," one focus group participant told him.

Another remarked, "It’s like the ground you walked on since you were a teenager is gone."

Rather than seek help, many men acknowledged that they dealt with ED by withdrawing emotionally, sidestepping the potential for intimacy.

"Doc, it’s fear. It’s fear, Doc," another participant told Dr. Nelson.

"Men are struggling [on average] for about 2 years before they actually pursue treatment," said Dr. Nelson, a psychologist at Memorial Sloan-Kettering Cancer Center in New York.

Ideally, he explained, ED rehabilitation should begin as soon as possible after surgery to maintain blood flow and muscle tone, and "biology dictates the best treatment."

A common, but temporary, effect of nerve-sparing surgery is not only ED, but also stretching of the nerves responsible for the nitric oxide release triggered by oral phosphodiesterase inhibitor drugs. Pills such as sildenafil (Viagra) and taldenafil (Cialis) are effective in only about 20% of men following surgery, so after a brief trial injection therapy is recommended for the maintenance of erections over the 18-24 months that it may take to recover what erectile function remains.

In addition to the barrier of avoidance, men adamantly complained to focus group researchers that they were not properly told before surgery about postsurgical side effects, including ED and its treatments.

"It was ... Theme One ... and clearly the most predominant theme [in the focus groups]," said Dr. Nelson. "We don’t know if surgeons are telling patients about side effects, and they [patients] are thinking about the surgery and just not hearing the information – or whether the surgeons are not giving the information. But clearly, there was a lot of frustration and anger."

While men said they found the idea of penile injections "freakish and barbaric," they did not find them as painful as they had feared. Some saw the long-term benefits of injection therapy to be worth their initial reluctance, but one remarked, "This is the most humiliating thing I’ve ever done in my life."

Considering the trend to diagnose and treat earlier-stage prostate cancer in younger men, combined with an 85% prevalence of ED 4 years post surgery, "it’s an important survivorship issue," Dr. Nelson said.

Drawing from focus group findings, he and his team were encouraged by men’s humor in discussing difficult and awkward topics, offering a potential guidepost for future interventions. He also said men were "not overly enthusiastic" about the proposed idea of psychological interventions during rehabilitation, but advised that such efforts might be better accepted if they were characterized as "coaching."

Indeed, Dr. Nelson and his colleagues drew on the focus group findings to launch a randomized controlled trial of an intervention based on Acceptance and Commitment Therapy, a psychological orientation that encourages participants to define values that are important to them. Over time, the goal is to learn to tolerate distress and overcome barriers in order to achieve goals associated with those prized values, Dr. Nelson explained.

Enrollment in the trial has commenced, and a handful of participants in each group have completed the intervention (or a control condition) during injection training for ED.

"An initial peek at the data looks promising," he said.

Funding for the study was provided through a grant from the National Cancer Institute.

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MIAMI – Faced with erectile dysfunction following prostate cancer surgery, many men adopt an avoidant coping style that inadvertently interferes with rehabilitation efforts to spare them long-term sexual side effects.

"We have ways of helping men to get their erections back; that isn’t the issue," Christian J. Nelson, Ph.D., said at the annual conference of the American Psychosocial Oncology Society.

"The issue is, men avoid and drop out of rehabilitation programs."

Avoidance was one key theme raised by 35 men who had undergone radical prostatectomy for prostate cancer 2-3 years prior to being recruited into focus groups by Dr. Nelson and his colleagues as an initial step in devising a more effective approach to erectile dysfunction (ED) rehabilitation. He presented results of a systematic analysis of those themes at the meeting, and offered a preview of the ongoing study that resulted.

Dr. Nelson described a cycle in which men experienced frustration, shame, and embarrassment over ED during a sexual experience following surgery, then began avoiding intimate contact due to anxiety. Relationship issues, depression, and increased frustration often followed.

"It’s absolutely devastating," one focus group participant told him.

Another remarked, "It’s like the ground you walked on since you were a teenager is gone."

Rather than seek help, many men acknowledged that they dealt with ED by withdrawing emotionally, sidestepping the potential for intimacy.

"Doc, it’s fear. It’s fear, Doc," another participant told Dr. Nelson.

"Men are struggling [on average] for about 2 years before they actually pursue treatment," said Dr. Nelson, a psychologist at Memorial Sloan-Kettering Cancer Center in New York.

Ideally, he explained, ED rehabilitation should begin as soon as possible after surgery to maintain blood flow and muscle tone, and "biology dictates the best treatment."

A common, but temporary, effect of nerve-sparing surgery is not only ED, but also stretching of the nerves responsible for the nitric oxide release triggered by oral phosphodiesterase inhibitor drugs. Pills such as sildenafil (Viagra) and taldenafil (Cialis) are effective in only about 20% of men following surgery, so after a brief trial injection therapy is recommended for the maintenance of erections over the 18-24 months that it may take to recover what erectile function remains.

In addition to the barrier of avoidance, men adamantly complained to focus group researchers that they were not properly told before surgery about postsurgical side effects, including ED and its treatments.

"It was ... Theme One ... and clearly the most predominant theme [in the focus groups]," said Dr. Nelson. "We don’t know if surgeons are telling patients about side effects, and they [patients] are thinking about the surgery and just not hearing the information – or whether the surgeons are not giving the information. But clearly, there was a lot of frustration and anger."

While men said they found the idea of penile injections "freakish and barbaric," they did not find them as painful as they had feared. Some saw the long-term benefits of injection therapy to be worth their initial reluctance, but one remarked, "This is the most humiliating thing I’ve ever done in my life."

Considering the trend to diagnose and treat earlier-stage prostate cancer in younger men, combined with an 85% prevalence of ED 4 years post surgery, "it’s an important survivorship issue," Dr. Nelson said.

Drawing from focus group findings, he and his team were encouraged by men’s humor in discussing difficult and awkward topics, offering a potential guidepost for future interventions. He also said men were "not overly enthusiastic" about the proposed idea of psychological interventions during rehabilitation, but advised that such efforts might be better accepted if they were characterized as "coaching."

Indeed, Dr. Nelson and his colleagues drew on the focus group findings to launch a randomized controlled trial of an intervention based on Acceptance and Commitment Therapy, a psychological orientation that encourages participants to define values that are important to them. Over time, the goal is to learn to tolerate distress and overcome barriers in order to achieve goals associated with those prized values, Dr. Nelson explained.

Enrollment in the trial has commenced, and a handful of participants in each group have completed the intervention (or a control condition) during injection training for ED.

"An initial peek at the data looks promising," he said.

Funding for the study was provided through a grant from the National Cancer Institute.

MIAMI – Faced with erectile dysfunction following prostate cancer surgery, many men adopt an avoidant coping style that inadvertently interferes with rehabilitation efforts to spare them long-term sexual side effects.

"We have ways of helping men to get their erections back; that isn’t the issue," Christian J. Nelson, Ph.D., said at the annual conference of the American Psychosocial Oncology Society.

"The issue is, men avoid and drop out of rehabilitation programs."

Avoidance was one key theme raised by 35 men who had undergone radical prostatectomy for prostate cancer 2-3 years prior to being recruited into focus groups by Dr. Nelson and his colleagues as an initial step in devising a more effective approach to erectile dysfunction (ED) rehabilitation. He presented results of a systematic analysis of those themes at the meeting, and offered a preview of the ongoing study that resulted.

Dr. Nelson described a cycle in which men experienced frustration, shame, and embarrassment over ED during a sexual experience following surgery, then began avoiding intimate contact due to anxiety. Relationship issues, depression, and increased frustration often followed.

"It’s absolutely devastating," one focus group participant told him.

Another remarked, "It’s like the ground you walked on since you were a teenager is gone."

Rather than seek help, many men acknowledged that they dealt with ED by withdrawing emotionally, sidestepping the potential for intimacy.

"Doc, it’s fear. It’s fear, Doc," another participant told Dr. Nelson.

"Men are struggling [on average] for about 2 years before they actually pursue treatment," said Dr. Nelson, a psychologist at Memorial Sloan-Kettering Cancer Center in New York.

Ideally, he explained, ED rehabilitation should begin as soon as possible after surgery to maintain blood flow and muscle tone, and "biology dictates the best treatment."

A common, but temporary, effect of nerve-sparing surgery is not only ED, but also stretching of the nerves responsible for the nitric oxide release triggered by oral phosphodiesterase inhibitor drugs. Pills such as sildenafil (Viagra) and taldenafil (Cialis) are effective in only about 20% of men following surgery, so after a brief trial injection therapy is recommended for the maintenance of erections over the 18-24 months that it may take to recover what erectile function remains.

In addition to the barrier of avoidance, men adamantly complained to focus group researchers that they were not properly told before surgery about postsurgical side effects, including ED and its treatments.

"It was ... Theme One ... and clearly the most predominant theme [in the focus groups]," said Dr. Nelson. "We don’t know if surgeons are telling patients about side effects, and they [patients] are thinking about the surgery and just not hearing the information – or whether the surgeons are not giving the information. But clearly, there was a lot of frustration and anger."

While men said they found the idea of penile injections "freakish and barbaric," they did not find them as painful as they had feared. Some saw the long-term benefits of injection therapy to be worth their initial reluctance, but one remarked, "This is the most humiliating thing I’ve ever done in my life."

Considering the trend to diagnose and treat earlier-stage prostate cancer in younger men, combined with an 85% prevalence of ED 4 years post surgery, "it’s an important survivorship issue," Dr. Nelson said.

Drawing from focus group findings, he and his team were encouraged by men’s humor in discussing difficult and awkward topics, offering a potential guidepost for future interventions. He also said men were "not overly enthusiastic" about the proposed idea of psychological interventions during rehabilitation, but advised that such efforts might be better accepted if they were characterized as "coaching."

Indeed, Dr. Nelson and his colleagues drew on the focus group findings to launch a randomized controlled trial of an intervention based on Acceptance and Commitment Therapy, a psychological orientation that encourages participants to define values that are important to them. Over time, the goal is to learn to tolerate distress and overcome barriers in order to achieve goals associated with those prized values, Dr. Nelson explained.

Enrollment in the trial has commenced, and a handful of participants in each group have completed the intervention (or a control condition) during injection training for ED.

"An initial peek at the data looks promising," he said.

Funding for the study was provided through a grant from the National Cancer Institute.

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Lung Cancer Trauma Leads to Emotional Growth

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MIAMI – Well over a third of non–small cell lung cancer patients met clinically diagnostic criteria for distress, but many of the same patients also demonstrated positive mental health outcomes in the form of posttraumatic growth, a University of Kentucky study showed.

The seemingly paradoxical results may suggest that the most troubled cancer patients have the most to gain from the experience of learning how to cope, audience members suggested at the annual meeting of the American Psychosocial Cancer Society, where the findings were presented.

"We know from a theoretical standpoint that in order to grow, you have to have distress," agreed Michael Andrykowski, Ph.D., of the University of Kentucky, Lexington, primary investigator of the study of distress and posttraumatic growth in 189 survivors of non–small cell lung cancer (NSCLC).

Patients recruited from a statewide Surveillance, Epidemiology and End Results (SEER) registry completed a series of questionnaires a median 15.5 months following their diagnosis.

Younger patients and those diagnosed with metastatic disease were most likely to be among the 37% who met the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) threshold for traumatic stress.

"As we anticipated, these survivors had poorer outcomes on distress [measures], on average two-thirds of a standard deviation. I think we agree that’s a clinically important difference," said Dr. Andrykowski.

What was not expected was that the same distressed survivors also demonstrated more posttraumatic growth – a term used to describe positive psychological change arising from hardship – than less-troubled survivors, he noted.

The mean effect size of posttraumatic growth between groups – traumatized vs. less-traumatized survivors, was .42, with the most distressed survivors reporting more improvement in personal relationships, personal strength, and spirituality.

Dr. Andrykowski suggested that the results may indicate that distress and growth are two separate and independent dimensions of adjustment, rather than opposite extremes on a continuum. In other words, someone could simultaneously be quite distressed by the cancer experience, and also experiencing meaningful insight into life’s priorities, connection to others, and the power of resiliency.

Intriguingly, clinically distressed survivors enrolled also reported less connection to mental health resources that would be assumed to be helpful in nurturing posttraumatic growth, such as a supportive social environment, a sense of optimism, and belief in their own efficacy.

"That’s something that I’m wrestling with and puzzled by," said Dr. Andrykowski.

He noted that data are still being collected on potential mediators that might offer clues as to how the most traumatized patients were able to grow as a result of their experience.

In the future, a longitudinal study tracking distress and posttraumatic growth over time might be able to track the origins of positive adjustment arising from an otherwise traumatic and difficult experience, he said.

Funding for the study was through a variety of federal grants. Rachel Steffens, a teaching assistant at the University of Kentucky, was coauthor. Neither investigator reported any relevant financial conflicts of interest.

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MIAMI – Well over a third of non–small cell lung cancer patients met clinically diagnostic criteria for distress, but many of the same patients also demonstrated positive mental health outcomes in the form of posttraumatic growth, a University of Kentucky study showed.

The seemingly paradoxical results may suggest that the most troubled cancer patients have the most to gain from the experience of learning how to cope, audience members suggested at the annual meeting of the American Psychosocial Cancer Society, where the findings were presented.

"We know from a theoretical standpoint that in order to grow, you have to have distress," agreed Michael Andrykowski, Ph.D., of the University of Kentucky, Lexington, primary investigator of the study of distress and posttraumatic growth in 189 survivors of non–small cell lung cancer (NSCLC).

Patients recruited from a statewide Surveillance, Epidemiology and End Results (SEER) registry completed a series of questionnaires a median 15.5 months following their diagnosis.

Younger patients and those diagnosed with metastatic disease were most likely to be among the 37% who met the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) threshold for traumatic stress.

"As we anticipated, these survivors had poorer outcomes on distress [measures], on average two-thirds of a standard deviation. I think we agree that’s a clinically important difference," said Dr. Andrykowski.

What was not expected was that the same distressed survivors also demonstrated more posttraumatic growth – a term used to describe positive psychological change arising from hardship – than less-troubled survivors, he noted.

The mean effect size of posttraumatic growth between groups – traumatized vs. less-traumatized survivors, was .42, with the most distressed survivors reporting more improvement in personal relationships, personal strength, and spirituality.

Dr. Andrykowski suggested that the results may indicate that distress and growth are two separate and independent dimensions of adjustment, rather than opposite extremes on a continuum. In other words, someone could simultaneously be quite distressed by the cancer experience, and also experiencing meaningful insight into life’s priorities, connection to others, and the power of resiliency.

Intriguingly, clinically distressed survivors enrolled also reported less connection to mental health resources that would be assumed to be helpful in nurturing posttraumatic growth, such as a supportive social environment, a sense of optimism, and belief in their own efficacy.

"That’s something that I’m wrestling with and puzzled by," said Dr. Andrykowski.

He noted that data are still being collected on potential mediators that might offer clues as to how the most traumatized patients were able to grow as a result of their experience.

In the future, a longitudinal study tracking distress and posttraumatic growth over time might be able to track the origins of positive adjustment arising from an otherwise traumatic and difficult experience, he said.

Funding for the study was through a variety of federal grants. Rachel Steffens, a teaching assistant at the University of Kentucky, was coauthor. Neither investigator reported any relevant financial conflicts of interest.

MIAMI – Well over a third of non–small cell lung cancer patients met clinically diagnostic criteria for distress, but many of the same patients also demonstrated positive mental health outcomes in the form of posttraumatic growth, a University of Kentucky study showed.

The seemingly paradoxical results may suggest that the most troubled cancer patients have the most to gain from the experience of learning how to cope, audience members suggested at the annual meeting of the American Psychosocial Cancer Society, where the findings were presented.

"We know from a theoretical standpoint that in order to grow, you have to have distress," agreed Michael Andrykowski, Ph.D., of the University of Kentucky, Lexington, primary investigator of the study of distress and posttraumatic growth in 189 survivors of non–small cell lung cancer (NSCLC).

Patients recruited from a statewide Surveillance, Epidemiology and End Results (SEER) registry completed a series of questionnaires a median 15.5 months following their diagnosis.

Younger patients and those diagnosed with metastatic disease were most likely to be among the 37% who met the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) threshold for traumatic stress.

"As we anticipated, these survivors had poorer outcomes on distress [measures], on average two-thirds of a standard deviation. I think we agree that’s a clinically important difference," said Dr. Andrykowski.

What was not expected was that the same distressed survivors also demonstrated more posttraumatic growth – a term used to describe positive psychological change arising from hardship – than less-troubled survivors, he noted.

The mean effect size of posttraumatic growth between groups – traumatized vs. less-traumatized survivors, was .42, with the most distressed survivors reporting more improvement in personal relationships, personal strength, and spirituality.

Dr. Andrykowski suggested that the results may indicate that distress and growth are two separate and independent dimensions of adjustment, rather than opposite extremes on a continuum. In other words, someone could simultaneously be quite distressed by the cancer experience, and also experiencing meaningful insight into life’s priorities, connection to others, and the power of resiliency.

Intriguingly, clinically distressed survivors enrolled also reported less connection to mental health resources that would be assumed to be helpful in nurturing posttraumatic growth, such as a supportive social environment, a sense of optimism, and belief in their own efficacy.

"That’s something that I’m wrestling with and puzzled by," said Dr. Andrykowski.

He noted that data are still being collected on potential mediators that might offer clues as to how the most traumatized patients were able to grow as a result of their experience.

In the future, a longitudinal study tracking distress and posttraumatic growth over time might be able to track the origins of positive adjustment arising from an otherwise traumatic and difficult experience, he said.

Funding for the study was through a variety of federal grants. Rachel Steffens, a teaching assistant at the University of Kentucky, was coauthor. Neither investigator reported any relevant financial conflicts of interest.

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Major Finding: More than a third – 37% – of patients with non–small cell lung cancer met the DSM-IV threshold for traumatic stress.

Data Source: Investigators analyzed questionnaires completed by 189 survivors of non–small cell lung cancer.

Disclosures: Funding was through a variety of federal grants. Neither investigator reported any relevant financial conflicts of interest.

Hispanic Cancer Patients Suffer More Pain, Severe Sadness

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MIAMI – Hispanic patients reported significantly higher rates of pain, numbness, cognition difficulties, vomiting, and severe sadness than non-Hispanics in a survey of 622 cancer patients awaiting appointments at three hospitals in the Bronx, New York City’s poorest borough.

"Hispanic patients consistently reported more emotional and practical complaints contributing to overall distress," Katie O'Callaghan reported at the annual meeting of the American Psychosocial Oncology Society.

"These are alarming results for us," she said.

Outpatients interviewed for the survey roughly reflected the demographics of the Bronx, a highly diverse, densely populated county where 5,000 new cancer cases are diagnosed each year. They were approached at Montefiore, Jacobi, and Lincoln hospitals.

With a mean age of 58 years (range, 18-100), the group included non-Hispanic whites (15%), African Americans (32%), and Hispanics (45%) with family origins in Mexico, the Caribbean, and South and Central America. Nearly three-quarters, 73%, were women. The most common cancers were breast (29%), gynecologic (14%), hematologic (10%), colorectal (9%), lung (7%), and prostate (3%).

Ms. O’Callaghan, research coordinator at Albert Einstein College of Medicine, New York, noted that among 256 Hispanics who completed the oral survey, 51% were Spanish-language dominant, reporting little or no English fluency. Communication barriers might be one explanation for the marked disparity in reports of physical symptoms, she suggested.

Indeed, on some measures, differences were seen between Hispanic patients who spoke English and those who did not. For example, 64% of Spanish-dominant Hispanics reported fatigue, compared with 49% of English-dominant Hispanic patients, a significant difference (P less than .05).

Spanish-dominant Hispanic patients also reported more practical problems (such as housing, transportation, and child care problems) as contributors to their distress (P less than .05).

But major differences persisted among the ethnic groups surveyed.

Overall, the same percentage – 49.5% – of Hispanic and white patients expressed clinically significant levels of distress – a composite measure that consists of 34 physical, practical, emotional, and spiritual/religious factors – compared with 42.5% of African Americans.

But 45% of Hispanic patients reported moderate to severe pain, more than twice the percentage of whites (20%) and substantially more than African Americans (37%). The differences among the three ethnic groups were significant (P less than .01).

Moderate to severe problems with cognition were reported by similar percentages of African Americans and whites (20% and 19%), but 31% of Hispanics, a difference significant at the P less than .05 level.

Sadness was reported as moderate to severe by 41% of Hispanics, and was significantly more distressful than in non-Hispanics in the survey (P less than .05). Again, about equal percentages of whites and African Americans reported great sadness (31% and 29%).

Divergence by ethnicity also was seen for moderate to severe numbness (reported by 39% of Hispanics, 30% of African Americans, and 20% of whites) and moderate to severe vomiting (reported by 13% of Hispanics and 8% of African Americans, but only 1% of whites).

"This psychological assessment study gives voice to the needs of Hispanic cancer patients who demonstrate greater distress and oncology symptoms [than other groups]," Ms. O’Callaghan said.

The silver lining in the study, she noted, was that Hispanic patients were also more likely than non-Hispanic patients, 26% vs. 21%, to be interested in receiving counseling for their emotional problems.

Coauthor Alyson B. Moadel, Ph.D., director of psychosocial oncology at the Albert Einstein Cancer Center, highlighted "a very big effort ... in terms of quality improvement," in part in response to the study findings.

One specific intervention is a volunteer companion program offering one-to-one support for cancer patients as they receive treatment for cancer, Dr. Moadel said, after Ms. O’Callaghan’s presentation at the meeting.

The study was funded by the Entertainment Industry Foundation; none of the authors reported any relevant financial disclosures.

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MIAMI – Hispanic patients reported significantly higher rates of pain, numbness, cognition difficulties, vomiting, and severe sadness than non-Hispanics in a survey of 622 cancer patients awaiting appointments at three hospitals in the Bronx, New York City’s poorest borough.

"Hispanic patients consistently reported more emotional and practical complaints contributing to overall distress," Katie O'Callaghan reported at the annual meeting of the American Psychosocial Oncology Society.

"These are alarming results for us," she said.

Outpatients interviewed for the survey roughly reflected the demographics of the Bronx, a highly diverse, densely populated county where 5,000 new cancer cases are diagnosed each year. They were approached at Montefiore, Jacobi, and Lincoln hospitals.

With a mean age of 58 years (range, 18-100), the group included non-Hispanic whites (15%), African Americans (32%), and Hispanics (45%) with family origins in Mexico, the Caribbean, and South and Central America. Nearly three-quarters, 73%, were women. The most common cancers were breast (29%), gynecologic (14%), hematologic (10%), colorectal (9%), lung (7%), and prostate (3%).

Ms. O’Callaghan, research coordinator at Albert Einstein College of Medicine, New York, noted that among 256 Hispanics who completed the oral survey, 51% were Spanish-language dominant, reporting little or no English fluency. Communication barriers might be one explanation for the marked disparity in reports of physical symptoms, she suggested.

Indeed, on some measures, differences were seen between Hispanic patients who spoke English and those who did not. For example, 64% of Spanish-dominant Hispanics reported fatigue, compared with 49% of English-dominant Hispanic patients, a significant difference (P less than .05).

Spanish-dominant Hispanic patients also reported more practical problems (such as housing, transportation, and child care problems) as contributors to their distress (P less than .05).

But major differences persisted among the ethnic groups surveyed.

Overall, the same percentage – 49.5% – of Hispanic and white patients expressed clinically significant levels of distress – a composite measure that consists of 34 physical, practical, emotional, and spiritual/religious factors – compared with 42.5% of African Americans.

But 45% of Hispanic patients reported moderate to severe pain, more than twice the percentage of whites (20%) and substantially more than African Americans (37%). The differences among the three ethnic groups were significant (P less than .01).

Moderate to severe problems with cognition were reported by similar percentages of African Americans and whites (20% and 19%), but 31% of Hispanics, a difference significant at the P less than .05 level.

Sadness was reported as moderate to severe by 41% of Hispanics, and was significantly more distressful than in non-Hispanics in the survey (P less than .05). Again, about equal percentages of whites and African Americans reported great sadness (31% and 29%).

Divergence by ethnicity also was seen for moderate to severe numbness (reported by 39% of Hispanics, 30% of African Americans, and 20% of whites) and moderate to severe vomiting (reported by 13% of Hispanics and 8% of African Americans, but only 1% of whites).

"This psychological assessment study gives voice to the needs of Hispanic cancer patients who demonstrate greater distress and oncology symptoms [than other groups]," Ms. O’Callaghan said.

The silver lining in the study, she noted, was that Hispanic patients were also more likely than non-Hispanic patients, 26% vs. 21%, to be interested in receiving counseling for their emotional problems.

Coauthor Alyson B. Moadel, Ph.D., director of psychosocial oncology at the Albert Einstein Cancer Center, highlighted "a very big effort ... in terms of quality improvement," in part in response to the study findings.

One specific intervention is a volunteer companion program offering one-to-one support for cancer patients as they receive treatment for cancer, Dr. Moadel said, after Ms. O’Callaghan’s presentation at the meeting.

The study was funded by the Entertainment Industry Foundation; none of the authors reported any relevant financial disclosures.

MIAMI – Hispanic patients reported significantly higher rates of pain, numbness, cognition difficulties, vomiting, and severe sadness than non-Hispanics in a survey of 622 cancer patients awaiting appointments at three hospitals in the Bronx, New York City’s poorest borough.

"Hispanic patients consistently reported more emotional and practical complaints contributing to overall distress," Katie O'Callaghan reported at the annual meeting of the American Psychosocial Oncology Society.

"These are alarming results for us," she said.

Outpatients interviewed for the survey roughly reflected the demographics of the Bronx, a highly diverse, densely populated county where 5,000 new cancer cases are diagnosed each year. They were approached at Montefiore, Jacobi, and Lincoln hospitals.

With a mean age of 58 years (range, 18-100), the group included non-Hispanic whites (15%), African Americans (32%), and Hispanics (45%) with family origins in Mexico, the Caribbean, and South and Central America. Nearly three-quarters, 73%, were women. The most common cancers were breast (29%), gynecologic (14%), hematologic (10%), colorectal (9%), lung (7%), and prostate (3%).

Ms. O’Callaghan, research coordinator at Albert Einstein College of Medicine, New York, noted that among 256 Hispanics who completed the oral survey, 51% were Spanish-language dominant, reporting little or no English fluency. Communication barriers might be one explanation for the marked disparity in reports of physical symptoms, she suggested.

Indeed, on some measures, differences were seen between Hispanic patients who spoke English and those who did not. For example, 64% of Spanish-dominant Hispanics reported fatigue, compared with 49% of English-dominant Hispanic patients, a significant difference (P less than .05).

Spanish-dominant Hispanic patients also reported more practical problems (such as housing, transportation, and child care problems) as contributors to their distress (P less than .05).

But major differences persisted among the ethnic groups surveyed.

Overall, the same percentage – 49.5% – of Hispanic and white patients expressed clinically significant levels of distress – a composite measure that consists of 34 physical, practical, emotional, and spiritual/religious factors – compared with 42.5% of African Americans.

But 45% of Hispanic patients reported moderate to severe pain, more than twice the percentage of whites (20%) and substantially more than African Americans (37%). The differences among the three ethnic groups were significant (P less than .01).

Moderate to severe problems with cognition were reported by similar percentages of African Americans and whites (20% and 19%), but 31% of Hispanics, a difference significant at the P less than .05 level.

Sadness was reported as moderate to severe by 41% of Hispanics, and was significantly more distressful than in non-Hispanics in the survey (P less than .05). Again, about equal percentages of whites and African Americans reported great sadness (31% and 29%).

Divergence by ethnicity also was seen for moderate to severe numbness (reported by 39% of Hispanics, 30% of African Americans, and 20% of whites) and moderate to severe vomiting (reported by 13% of Hispanics and 8% of African Americans, but only 1% of whites).

"This psychological assessment study gives voice to the needs of Hispanic cancer patients who demonstrate greater distress and oncology symptoms [than other groups]," Ms. O’Callaghan said.

The silver lining in the study, she noted, was that Hispanic patients were also more likely than non-Hispanic patients, 26% vs. 21%, to be interested in receiving counseling for their emotional problems.

Coauthor Alyson B. Moadel, Ph.D., director of psychosocial oncology at the Albert Einstein Cancer Center, highlighted "a very big effort ... in terms of quality improvement," in part in response to the study findings.

One specific intervention is a volunteer companion program offering one-to-one support for cancer patients as they receive treatment for cancer, Dr. Moadel said, after Ms. O’Callaghan’s presentation at the meeting.

The study was funded by the Entertainment Industry Foundation; none of the authors reported any relevant financial disclosures.

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FROM THE ANNUAL MEETING OF THE AMERICAN PSYCHOSOCIAL ONCOLOGY SOCIETY

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Major Finding: Fully 45% of Hispanic patients reported moderate to severe pain, compared with 20% of whites, and 37% of African Americans (P less than .01).

Data Source: Investigators surveyed 622 cancer patients awaiting appointments at three hospitals in the Bronx.

Disclosures: The study was funded by the Entertainment Industry Foundation; none of the authors reported any relevant financial disclosures.

Study: Myeloma Survival Gains, but QOL Slides

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MIAMI – Patients who are diagnosed with multiple myeloma can expect to live longer than in the past, but their symptom burden remains considerable for at least 10 years after diagnosis, a prospective, population-based, Dutch study has concluded.

"The symptom burden is not only caused by the disease itself but also by the new aggressive treatments," said Floortje Mols, Ph.D., of Tilburg (the Netherlands) University at the annual conference of the American Psychosocial Oncology Society.

Dr. Floortje Mols

Dr. Mols and her coauthors identified multiple myeloma patients in the Eindhoven (the Netherlands) Cancer Registry who had been diagnosed during 1999-2010 in that country. They surveyed the survivors twice – at baseline and a year later – along with an age- and sex-matched population-based cohort.

At baseline, 156 survivors reported significantly lower scores than did the control group on every subscale of the EORTC QLQ-C30 (European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire), a validated instrument that has been used in more than 3,000 published studies. No significant differences were seen in symptom and quality of life scores between short-term (defined as up to 5 years) and long-term (more than 5 years) survivors, she reported.

Physical functioning, fatigue, and dyspnea scores diverged from those in the controls most strikingly, but the difference was statistically significant for every subscale with P scores of less than 0.01 and beyond, said Dr. Mols, a medical psychologist at the university’s center of research on psychology in somatic diseases and the Comprehensive Cancer Centre South, Eindhoven.

In addition, multiple myeloma survivors reported a high rate of disease-specific symptoms, including tingling and numbness, pain, and drowsiness – even years beyond diagnosis. Peripheral neuropathy is a common side effect of therapy for multiple myeloma.

At baseline, 37% of short- and long-term survivors reported worrying about their health during the previous week, 34% reported worrying about their disease, and 21% reported worrying "very much or quite a bit" about dying.

In the second round, at a 1-year follow-up, 80 survivors (including some diagnosed more recently) responded to the same questionnaire. Over that time, quality of life had diminished further for 74% of respondents (mean score, 55 vs. 68; P less than .001).

Half of the patients reported more fatigue, 71% more nausea and vomiting, 59% more pain, and 66% more dyspnea than at baseline. The most bothersome symptoms cited in the follow-up survey included tingling of the hands and feet (32%), back pain (28%), bone aches and pain (26%), pain in the arms and shoulders (19%), and drowsiness (18%).

"Maximizing disease control while minimizing these symptoms with supportive care for the entire survivorship trajectory is, I think, one of the major challenges of multiple myeloma treatment," said Dr. Mols.

She recommended referral of survivors to specific cancer survivorship care programs for management of symptoms that extend beyond the active phase of their treatment.

Improvement – and Side Effects

Dr. William I. Bensinger, who was not affiliated with the study, said following the meeting that the results were "not surprising."

"We have made great strides in the management of multiple myeloma, and patients are clearly living longer. Some of these improved treatments, however, come with the risk of significant side effects," said Dr. Bensinger, professor of medicine at the University of Washington and Fred Hutchinson Cancer Research Center in Seattle.

Dr. Bensinger called the results "a wake-up call to my fellow oncologists that we need to do a better job of proactively managing symptoms of treatment in order to improve our patients’ quality of life."

Ebb and Flow in QOL

Another multiple myeloma specialist, Dr. Jayesh Mehta, a professor of medicine at Northwestern University in Chicago, said that quality of life may ebb and flow over the course of many years in survivors.

"What we see in a typical patient is somewhat impaired quality of life at baseline that may worsen or remain stable in the short term, but improves by a year after diagnosis, remains good for a few years – say, 3 to 5 – worsens somewhat when there is relapse due to disease and therapy, stabilizes as the disease responds, and then worsens again when the disease returns."

Funding for the study was provided by the Netherlands Organization for Scientific Research, the Dutch Cancer Society, the Jonker-Driessen Foundation, ZonMW (the Netherlands organization for health research and development), and PHAROS (Population-Based Haematological Registry for Observational Studies).

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MIAMI – Patients who are diagnosed with multiple myeloma can expect to live longer than in the past, but their symptom burden remains considerable for at least 10 years after diagnosis, a prospective, population-based, Dutch study has concluded.

"The symptom burden is not only caused by the disease itself but also by the new aggressive treatments," said Floortje Mols, Ph.D., of Tilburg (the Netherlands) University at the annual conference of the American Psychosocial Oncology Society.

Dr. Floortje Mols

Dr. Mols and her coauthors identified multiple myeloma patients in the Eindhoven (the Netherlands) Cancer Registry who had been diagnosed during 1999-2010 in that country. They surveyed the survivors twice – at baseline and a year later – along with an age- and sex-matched population-based cohort.

At baseline, 156 survivors reported significantly lower scores than did the control group on every subscale of the EORTC QLQ-C30 (European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire), a validated instrument that has been used in more than 3,000 published studies. No significant differences were seen in symptom and quality of life scores between short-term (defined as up to 5 years) and long-term (more than 5 years) survivors, she reported.

Physical functioning, fatigue, and dyspnea scores diverged from those in the controls most strikingly, but the difference was statistically significant for every subscale with P scores of less than 0.01 and beyond, said Dr. Mols, a medical psychologist at the university’s center of research on psychology in somatic diseases and the Comprehensive Cancer Centre South, Eindhoven.

In addition, multiple myeloma survivors reported a high rate of disease-specific symptoms, including tingling and numbness, pain, and drowsiness – even years beyond diagnosis. Peripheral neuropathy is a common side effect of therapy for multiple myeloma.

At baseline, 37% of short- and long-term survivors reported worrying about their health during the previous week, 34% reported worrying about their disease, and 21% reported worrying "very much or quite a bit" about dying.

In the second round, at a 1-year follow-up, 80 survivors (including some diagnosed more recently) responded to the same questionnaire. Over that time, quality of life had diminished further for 74% of respondents (mean score, 55 vs. 68; P less than .001).

Half of the patients reported more fatigue, 71% more nausea and vomiting, 59% more pain, and 66% more dyspnea than at baseline. The most bothersome symptoms cited in the follow-up survey included tingling of the hands and feet (32%), back pain (28%), bone aches and pain (26%), pain in the arms and shoulders (19%), and drowsiness (18%).

"Maximizing disease control while minimizing these symptoms with supportive care for the entire survivorship trajectory is, I think, one of the major challenges of multiple myeloma treatment," said Dr. Mols.

She recommended referral of survivors to specific cancer survivorship care programs for management of symptoms that extend beyond the active phase of their treatment.

Improvement – and Side Effects

Dr. William I. Bensinger, who was not affiliated with the study, said following the meeting that the results were "not surprising."

"We have made great strides in the management of multiple myeloma, and patients are clearly living longer. Some of these improved treatments, however, come with the risk of significant side effects," said Dr. Bensinger, professor of medicine at the University of Washington and Fred Hutchinson Cancer Research Center in Seattle.

Dr. Bensinger called the results "a wake-up call to my fellow oncologists that we need to do a better job of proactively managing symptoms of treatment in order to improve our patients’ quality of life."

Ebb and Flow in QOL

Another multiple myeloma specialist, Dr. Jayesh Mehta, a professor of medicine at Northwestern University in Chicago, said that quality of life may ebb and flow over the course of many years in survivors.

"What we see in a typical patient is somewhat impaired quality of life at baseline that may worsen or remain stable in the short term, but improves by a year after diagnosis, remains good for a few years – say, 3 to 5 – worsens somewhat when there is relapse due to disease and therapy, stabilizes as the disease responds, and then worsens again when the disease returns."

Funding for the study was provided by the Netherlands Organization for Scientific Research, the Dutch Cancer Society, the Jonker-Driessen Foundation, ZonMW (the Netherlands organization for health research and development), and PHAROS (Population-Based Haematological Registry for Observational Studies).

MIAMI – Patients who are diagnosed with multiple myeloma can expect to live longer than in the past, but their symptom burden remains considerable for at least 10 years after diagnosis, a prospective, population-based, Dutch study has concluded.

"The symptom burden is not only caused by the disease itself but also by the new aggressive treatments," said Floortje Mols, Ph.D., of Tilburg (the Netherlands) University at the annual conference of the American Psychosocial Oncology Society.

Dr. Floortje Mols

Dr. Mols and her coauthors identified multiple myeloma patients in the Eindhoven (the Netherlands) Cancer Registry who had been diagnosed during 1999-2010 in that country. They surveyed the survivors twice – at baseline and a year later – along with an age- and sex-matched population-based cohort.

At baseline, 156 survivors reported significantly lower scores than did the control group on every subscale of the EORTC QLQ-C30 (European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire), a validated instrument that has been used in more than 3,000 published studies. No significant differences were seen in symptom and quality of life scores between short-term (defined as up to 5 years) and long-term (more than 5 years) survivors, she reported.

Physical functioning, fatigue, and dyspnea scores diverged from those in the controls most strikingly, but the difference was statistically significant for every subscale with P scores of less than 0.01 and beyond, said Dr. Mols, a medical psychologist at the university’s center of research on psychology in somatic diseases and the Comprehensive Cancer Centre South, Eindhoven.

In addition, multiple myeloma survivors reported a high rate of disease-specific symptoms, including tingling and numbness, pain, and drowsiness – even years beyond diagnosis. Peripheral neuropathy is a common side effect of therapy for multiple myeloma.

At baseline, 37% of short- and long-term survivors reported worrying about their health during the previous week, 34% reported worrying about their disease, and 21% reported worrying "very much or quite a bit" about dying.

In the second round, at a 1-year follow-up, 80 survivors (including some diagnosed more recently) responded to the same questionnaire. Over that time, quality of life had diminished further for 74% of respondents (mean score, 55 vs. 68; P less than .001).

Half of the patients reported more fatigue, 71% more nausea and vomiting, 59% more pain, and 66% more dyspnea than at baseline. The most bothersome symptoms cited in the follow-up survey included tingling of the hands and feet (32%), back pain (28%), bone aches and pain (26%), pain in the arms and shoulders (19%), and drowsiness (18%).

"Maximizing disease control while minimizing these symptoms with supportive care for the entire survivorship trajectory is, I think, one of the major challenges of multiple myeloma treatment," said Dr. Mols.

She recommended referral of survivors to specific cancer survivorship care programs for management of symptoms that extend beyond the active phase of their treatment.

Improvement – and Side Effects

Dr. William I. Bensinger, who was not affiliated with the study, said following the meeting that the results were "not surprising."

"We have made great strides in the management of multiple myeloma, and patients are clearly living longer. Some of these improved treatments, however, come with the risk of significant side effects," said Dr. Bensinger, professor of medicine at the University of Washington and Fred Hutchinson Cancer Research Center in Seattle.

Dr. Bensinger called the results "a wake-up call to my fellow oncologists that we need to do a better job of proactively managing symptoms of treatment in order to improve our patients’ quality of life."

Ebb and Flow in QOL

Another multiple myeloma specialist, Dr. Jayesh Mehta, a professor of medicine at Northwestern University in Chicago, said that quality of life may ebb and flow over the course of many years in survivors.

"What we see in a typical patient is somewhat impaired quality of life at baseline that may worsen or remain stable in the short term, but improves by a year after diagnosis, remains good for a few years – say, 3 to 5 – worsens somewhat when there is relapse due to disease and therapy, stabilizes as the disease responds, and then worsens again when the disease returns."

Funding for the study was provided by the Netherlands Organization for Scientific Research, the Dutch Cancer Society, the Jonker-Driessen Foundation, ZonMW (the Netherlands organization for health research and development), and PHAROS (Population-Based Haematological Registry for Observational Studies).

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multiple myeloma, live longer, symptom burden, new aggressive treatments, Floortje Mols, Ph.D., the American Psychosocial Oncology Society, Eindhoven (the Netherlands) Cancer Registry, EORTC QLQ-C30, European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire, quality of life, tingling and numbness, pain, and drowsiness, Peripheral neuropathy,
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FROM THE ANNUAL CONFERENCE OF THE AMERICAN PSYCHOSOCIAL ONCOLOGY SOCIETY

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Inside the Article

Vitals

Major Finding: In 1 year, quality of life diminished for 74% of respondents (mean score, 55 vs. 68; P less than .001).

Data Source: The data were self-reported on the EORTC QLQ-C30 questionnaire by multiple myeloma survivors in the Eindhoven (the Netherlands) Cancer Registry.

Disclosures: Funding for the study was provided by the Netherlands Organization for Scientific Research, the Dutch Cancer Society, the Jonker-Driessen Foundation, ZonMW (the Netherlands organization for health research and development), and the PHAROS (Population-Based Haematological Registry for Observational Studies).