Transitioning patients with developmental disabilities to adult care

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doi:10.12788/jfp.0232

Applied Evidence

Transitioning patients with developmental disabilities to adult care

J Fam Pract. 2021 July;70(6):280-288 | 10.12788/jfp.0232

By

Carl V. Tyler Jr, MD, MSc

Molly McDermott, DO

The pre-visit questionnaire, instructive videos, and Web resources detailed here can help you play a pivotal role in planning, commencing, and solidifying this transition.

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PRACTICE RECOMMENDATIONS

› Provide young people who have an intellectual or other developmental disability (IDD) with a defined, explicit process for making the transition into the adult health care system. A

› Conduct an annual comprehensive, systematic health assessment for patients who have IDD to improve detection of serious conditions and sensory impairments. A

› Encourage young people and adults with IDD to participate in regular physical activity to reduce psychosocial stressors and counteract metabolic syndromes. A

Strength of recommendation (SOR)

A Good-quality patient-oriented evidence
B Inconsistent or limited-quality patient-oriented evidence
C Consensus, usual practice, opinion, disease-oriented evidence, case series

References

1. Sullivan WF, Diepstra H, Heng J, et al. Primary care of adults with intellectual and developmental disabilities: 2018 Canadian consensus guidelines. Can Fam Physician. 2018;64:254-279.

2. World Health Organization. International Classification of Impairments, Disabilities, and Handicaps: A Manual of Classification Relating to the Consequences of Disease. May 1980. Accessed May 27, 2021. https://apps.who.int/iris/bitstream/handle/10665/41003/9241541261_eng.pdf?sequence=1&isAllowed=y

3. Berens J, Wozow C, Peacock C. Transition to adult care. Phys Med Rehabil Clin N Am. 2020;31:159-170. doi:10.1016/j.pmr.2019.09.004

4. American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians; Transitions Clinical Report Authoring Group; Cooley WC, Sagerman PJ. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011;128:182-200. doi:10.1542/peds.2011-0969

5. Dressler PB, Nguyen TK, Moody EJ, et al. Use of transition resources by primary care providers for youth with intellectual and developmental disabilities. Intellect Dev Disabil. 2018;56:56-68. doi:10.1352/1934-9556-56.1.56

6. The National Alliance to Advance Adolescent Health. Six Core Elements of Health Care Transition.™ Got Transition website. Accessed May 27, 2021. www.gottransition.org

7. Schmidt A, Ilango SM, McManus MA, et al. Outcomes of pediatric to adult health care transition interventions: an updated systematic review. J Pediatr Nurs. 2020; 51:92-107. doi: 10.1016/j.pedn.2020.01.002

8. Keith JM, Bennetto L, Rogge RD. The relationship between contact and attitudes: reducing prejudice toward individuals with intellectual and developmental disabilities. Res Dev Disabil. 2015;47:14-26. doi:10.1016/j.ridd.2015.07.032

9. United Spinal Association. Disability Etiquette: Tips on Interacting With People With Disabilities. 2015. Accessed June 9, 2021. www.unitedspinal.org/pdf/DisabilityEtiquette.pdf

10. Nathawad R, Hanks C. Optimizing the office visit for adolescents with special health care needs. Curr Probl Pediatr Adolesc Health Care. 2017;47:182-189. doi:10.1016/j.cppeds.2017.07.002

11. Tyler CV, Baker S. Intellectual Disabilities at Your Fingertips: A Health Care Resource. High Tide Press; 2009.

12. Williamson HJ, Perkins EA. Family caregivers of adults with intellectual and developmental disabilities: outcomes associated with U.S. services and supports. Intellect Dev Disabil. 2014;52:147-159. doi: 10.1352/1934-9556-52.2.147

13. Robertson J, Hatton C, Emerson E, et al. The impact of health checks for people with intellectual disabilities: an updated systematic review of evidence. Res Dev Disabil. 2014;35:2450-2462. doi:10.1016/j.ridd.2014.06.007

14. Perry J, Felce D, Kerr M, et al. Contact with primary care: the experience of people with intellectual disabilities. J Appl Res Intellect Disabil. 2014;27:200-211. doi: 10.1111/jar.12072

15. Recommendation topics. United States Preventive Services Task Force website. 2020. Accessed May 27, 2021. www.uspreventiveservicestaskforce.org

16. Developmental Disabilities Primary Care Initiative. Tools for the Primary Care of People with Developmental Disabilities. 1st ed. MUMS Guideline Clearinghouse; 2011.

17. Jang W, Kim Y, Han E, et al. Chromosomal microarray analysis as a first-tier clinical diagnostic test in patients with developmental delay/intellectual disability, autism spectrum disorders, and multiple congenital anomalies: a prospective multicenter study in Korea. Ann Lab Med. 2019;39:299-310. doi:10.3343/alm.2019.39.3.299

18. Shireman TI, Reichard A, Nazir N, et al. Quality of diabetes care for adults with developmental disabilities. Disabil Health J. 2010;3:179-185. doi:10.1016/j.dhjo.2009.10.004

19. Cyrus AC, Royer J, Carroll DD, et al. Anti-hypertensive medication use and actors related to adherence among adults with intellectual and developmental disabilities. Am J Intellect Dev Disabil. 2019;124:248-262. doi:10.1352/1944-7558-124.3.248

20. IDD/MI diagnosis. National Association for the Dually Diagnosed (NADD) website. 2019. Accessed May 27, 2021. https://thenadd.org/idd-mi-diagnosis

21. Matson JL, Mayville EA, Bielecki J, et al. Reliability of the Matson Evaluation of Drug Side Effects Scale (MEDS). Res Dev Disabil. 1998;19:501-506. doi:10.1016/s0891-4222(98)00021-3

22. Fletcher R, Barnhill J, Cooper SA. (2017). Diagnostic Manual-Intellectual Disability: A Textbook of Diagnosis of Mental Disorders in Persons with Intellectual Disability. 2nd ed. National Association for the Dually Diagnosed (NADD); 2017.

23. Marrus N, Hall L. Intellectual disability and language disorder. Child Adolesc Psychiatr Clin N Am. 2017;26:539-554. doi:10.1016/j.chc.2017.03.001

24. Rimmer JH, Yamaki K. Obesity and intellectual disability. Ment Retard Dev Disabil Res Rev. 2006;12;22-7. doi: 10.1002/mrdd.20091

25. Ptomey LT, Saunders RR, Saunders M, et al. Weight management in adults with intellectual and developmental disabilities: a randomized controlled trial of two dietary approaches. J Appl Res Intellect Disabil. 2018;31(suppl 1):82-96. doi:10.1111/jar.12348

26. Marks B, Sisirak J, Magallanes R, et al. Effectiveness of a HealthMessages peer-to-peer program for people with intellectual and developmental disabilities. Intellect Dev Disabil. 2019;57:242-258. doi:10.1352/1934-9556-57.3.242

27. Escudé C. Clinical Pearls in IDD Health care. HRS, Inc; 2020.

28. Kapsal NJ, Dicke T, Morin AJS, et al. Effects of physical activity on the physical and psychosocial health of youth with intellectual disabilities: a systematic review and meta-analysis. J Phys Act Health. 2019;16:1187-1195. doi:10.1123/jpah.2018-0675

29. Physical Activity Guidelines for Americans. 2nd ed. US Department of Health and Human Services; 2018. Accessed May 29, 2021. https://health.gov/sites/default/files/2019-09/Physical_Activity_Guidelines_2nd_edition.pdf

30. National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention. Physical activity for people with disability. September 2020. Accessed May 27, 2021. www.cdc.gov/ncbddd/disabilityandhealth/features/physical-activity-for-all.html

31. Introduction to strengthening exercises. National Center on Health, Physical Activity and Disability (NCHPAD). 2020. Accessed May 27, 2021. www.nchpad.org/374/2096/Strengthening~Exercises

Some adults who have an intellectual or other developmental disability (IDD) require extensive subspecialty care; many, however, depend primarily on their family physician for the bulk of their health care. With that reliance in mind, this article provides (1) an overview of important services that family physicians can provide for their adult patients with IDD and (2) pragmatic clinical suggestions for tailoring that care. Note: We highlight only some high-impact areas of clinical focus; refer to the 2018 Canadian consensus guidelines for a comprehensive approach to optimizing primary care for this population.¹

CASE

Laura S, a 24-year-old woman with Down syndrome, is visiting your clinic with her mother to establish care. Ms. S has several medical comorbidities, including type 2 diabetes, hyperlipidemia, repaired congenital heart disease, schizoaffective disorder, and hypothyroidism. She is under the care of multiple specialists, including a cardiologist and an endocrinologist. Her medications include the atypical antipsychotic risperidone, which was prescribed for her through the services of a community mental health center.

Ms. S is due for multiple preventive health screenings. She indicates that she feels nervous today talking about these screenings with a new physician.

First step in care: Proficiency in the lexicon of IDD

Three core concepts of IDD are impairment, disability, and handicap. According to the World Health Organization²:

impairment “is any loss or abnormality of psychological, physiological, or anatomical structure or function.”
disability “is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being.”
handicap therefore “represents socialization of an impairment or disability, and as such it reflects the consequences for the individual—cultural, social, economic, and environmental—that stem from the presence of impairment and disability.”

Essential transition: Pediatric to adult health care

Health care transition (HCT) is the planned process of transferring care from a pediatric to an adult-based health care setting,³ comprising 3 phases:

preparation
transfer from pediatric to adult care
integration into adult-based care.

Two critical components of a smooth HCT include initiating the transition early in adolescence and providing transition-support resources, which are often lacking, even in large, integrated health systems.⁴ Got Transition, created by the National Alliance to Advance Adolescent Health, outlines core elements of an organized HCT process (www.gottransition.org) specific to young adults with IDD, including young adults with autism spectrum disorder.^5,6

Even young people who are served by a family physician and who intend to remain in that family practice as they age into adulthood require HCT services that include⁶:

assessment of readiness to transition to adult care
update of the medical history
assessment and promotion of self-care skills
consent discussions and optimized participation in decision-making
transition of specialty care from pediatric to adult specialists.

Continue to: For an ideal HCT...