Skip to main content
SpringerLink
Log in

Transition Care for Adolescents and Young Adults with Neuromuscular Disease and Chronic Pulmonary Care Needs

  • Chapter
  • First Online:
Transitioning Care from Pediatric to Adult Pulmonology

Part of the book series: Respiratory Medicine ((RM))

  • 331 Accesses

Abstract

The care of adolescents and young adults with neuromuscular disease and chronic pulmonary care needs is an involved and complex experience for providers, patients, and families. This population is best served by a multidisciplinary team model, if at all possible, including subspecialists, primary care providers, allied health professionals, and social work or care managers. In addition to managing medical complexity, special attention needs to be dedicated to addressing the psychosocial and developmental needs of these patients as they enter adulthood and work to maximize their functional, social, and economic independence. Additionally, issues such as guardianship and aging caregivers need to be addressed for many patients. There are many tools available to help guide patients, families, and providers during this time, including the gottransition.org model and several disease-specific programs. However, there remains a paucity of objective data to guide evidence-based models of care. Providers and programs can and should utilize their strengths to build comprehensive care structures for these transitioning patients, though more evidence is needed to better identify best practices to maximize patient outcomes and satisfaction during this critical phase of their disease experience and life journey. Expanding life expectancy in this patient population is a new and evolving challenge to the healthcare system, offering new opportunities for care optimization and research.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 84.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 109.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 159.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Bibliography

  1. A Guide to Disability Rights Laws. 24 Feb 2020. Disponível em: https://www.ada.gov/cguide.htm#anchor62335. Acesso em: 7 Apr.

  2. Abbott D, Carpenter J, Bushby K. Transition to adulthood for young men with Duchenne muscular dystrophy: research from the UK. Neuromuscul Disord. 2012;22(5):445–6.

    Article  Google Scholar 

  3. Agarwal A, Willis D, Tang X, Bauer M, et al. Transition of respiratory technology dependent patients from pediatric to adult pulmonology care. Pediatr Pulmonol. 2015;50(12):1294–300.

    Article  Google Scholar 

  4. Baldanzi S, Ricci G, Simoncini C, Cosci ODCM, et al. Hard ways towards adulthood: the transition phase in young people with myotonic dystrophy. Acta Myol. 2016;35(3):145–9.

    PubMed  PubMed Central  Google Scholar 

  5. Bent N, Tennant A, Swift T, Posnett J, et al. Team approach versus ad hoc health services for young people with physical disabilities: a retrospective cohort study. Lancet. 2002;360(9342):1280–6.

    Article  CAS  Google Scholar 

  6. Bushby K, Finkel R, Birnkrant DJ, Case LE, et al. Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and pharmacological and psychosocial management. Lancet Neurol. 2010a;9(1):77–93.

    Article  Google Scholar 

  7. Bushby K, Finkel R, Birnkrant DJ, Case LE, et al. Diagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multidisciplinary care. Lancet Neurol. Feb 2010b;9(2):177–89.

    Article  CAS  Google Scholar 

  8. Chatwin M, Tan HL, Bush A, Rosenthal M, et al. Long term non-invasive ventilation in children: impact on survival and transition to adult care. PLoS One. 2015;10(5):e0125839.

    Article  Google Scholar 

  9. Disability Benefits. Disponível em: https://www.ssa.gov/benefits/disability/. Acesso em: 7 Apr.

  10. Disability Evaluation Under Social Security. Medical/Professional relations. Disponível em: https://www.ssa.gov/disability/professionals/bluebook/general-info.htm. Acesso em: 7 Apr.

  11. Disability, U. N. D. O. E. A. S. A. Convention on the Rights of Persons with Disabilities: Article 12 – Equal recognition before the law. Disponível em: https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-12-equal-recognition-before-the-law.html.

  12. Duchenne and Becker muscular dystrophy. Your guide to understanding genetic conditions, Genetics Home Reference, NIH, 2020. Acesso em: 7 Apr.

    Google Scholar 

  13. Dystrophinopathies. Neuromuscular, Neuromuscular Disease Center, 5/16/19 2019. Disponível em: https://neuromuscular.wustl.edu/musdist/dmd.html. Acesso em: 7 Apr.

  14. Evan EE, Zeltzer LK. Psychosocial dimensions of cancer in adolescents and young adults. Cancer. 2006;107(7 Suppl):1663–71.

    Article  Google Scholar 

  15. Gloss D, Moxley RT, Ashwal S, Oskoui M. Practice guideline update summary: corticosteroid treatment of Duchenne muscular dystrophy: report of the guideline development Subcommittee of the American Academy of Neurology. In: Neurology, vol. 86; 2016. p. 465–72.

    Google Scholar 

  16. Goodman DM, Hall M, Levin A, Watson RS, et al. Adults with chronic health conditions originating in childhood: inpatient experience in children’s hospitals. Pediatrics. 2011;128(1):5–13.

    Article  Google Scholar 

  17. Got Transition. Disponível em: https://www.gottransition.org/. Acesso em: 7 Apr.

  18. Hamdani Y, Mistry B, Gibson BE. Transitioning to adulthood with a progressive condition: best practice assumptions and individual experiences of young men with Duchenne muscular dystrophy. Disabil Rehabil. 2015;37(13):1144–51.

    Article  Google Scholar 

  19. Hendriksen JG, Vles JS. Neuropsychiatric disorders in males with Duchenne muscular dystrophy: frequency rate of attention-deficit hyperactivity disorder (ADHD), autism spectrum disorder, and obsessive – compulsive disorder. J Child Neurol. 2008;23(5):477–81.

    Google Scholar 

  20. Lindsay S, Mcadam L, Mahendiran T. Enablers and barriers of men with Duchenne muscular dystrophy transitioning from an adult clinic within a pediatric hospital. Disabil Health J. 2017;10(1):73–9.

    Article  Google Scholar 

  21. Michelson D, Ciafaloni E, Ashwal S, Lewis E, et al. Evidence in focus: Nusinersen use in spinal muscular atrophy: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology. Neurology. 2018;91(20):923–33.

    Article  Google Scholar 

  22. Mixter S, Stewart RW. Adult head and neck health care needs for individuals with complex chronic conditions of childhood. Med Clin North Am. 2018;102(6):1055–61.

    Article  Google Scholar 

  23. Ng SY, Dinesh SK, Tay SK, Lee EH. Decreased access to health care and social isolation among young adults with cerebral palsy after leaving school. J Orthop Surg (Hong Kong). 2003;11(1):80–9.

    Article  CAS  Google Scholar 

  24. Online Mendelian Inheritance in Man (OMIM). 2020.

    Google Scholar 

  25. Passamano L, Taglia A, Palladino A, Viggiano E, et al. Improvement of survival in Duchenne Muscular Dystrophy: retrospective analysis of 835 patients. Acta Myol. 2012;31:121–5.

    PubMed  PubMed Central  Google Scholar 

  26. Pinquart M, Teubert D. Academic, physical, and social functioning of children and adolescents with chronic physical illness: a meta-analysis. J Pediatr Psychol. 2012;37(4):376–89.

    Article  Google Scholar 

  27. Preutthipan A. Home mechanical ventilation in children. Indian J Pediatr. Sep 2015;82(9):852–9.

    Article  Google Scholar 

  28. Rauen K, Sawin KJ, Bartelt T, Waring WP, et al. Transitioning adolescents and young adults with a chronic health condition to adult healthcare - an exemplar program. Rehabil Nurs. 2013;38(2):63–72.

    Article  Google Scholar 

  29. Ricotti V, Mandy WP, Scoto M, Pane M, et al. Neurodevelopmental, emotional, and behavioural problems in Duchenne muscular dystrophy in relation to underlying dystrophin gene mutations. Dev Med Child Neurol. 2016;58(1):77–84.

    Article  Google Scholar 

  30. Rizzolo MC, Hemp R, Braddock D, Schindler A. Family support services for persons with intellectual and developmental disabilities: recent national trends. Intellect Dev Disabil. 2009;47(2):152–5.

    Article  Google Scholar 

  31. Schrans DG, Abbott D, Peay HL, Pangalila RF, et al. Transition in Duchenne muscular dystrophy: an expert meeting report and description of transition needs in an emergent patient population: (Parent Project Muscular Dystrophy Transition Expert Meeting 17–18 June 2011, Amsterdam, The Netherlands). Neuromuscul Disord. 2013;23(3):283–6.

    Article  CAS  Google Scholar 

  32. Sonneveld HM, Strating MM, Van Staa AL, Nieboer AP. Gaps in transitional care: what are the perceptions of adolescents, parents and providers? Child Care Health Dev. 2013;39(1):69–80.

    Article  CAS  Google Scholar 

  33. Statute and Regulations. Disponível em: https://sites.ed.gov/idea/statuteregulations/#regulations. Acesso em: 7 Apr.

  34. Suris JC, Michaud PA, Akre C, Sawyer SM. Health risk behaviors in adolescents with chronic conditions. Pediatrics. 2008;122(5):e1113–8.

    Article  Google Scholar 

  35. Temel JS, Greer JA, Muzikansky A, Gallagher ER, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733–42.

    Article  CAS  Google Scholar 

  36. The Rehabilitation Act of 1973. 10 Dec 2015. Disponível em: https://www2.ed.gov/policy/speced/reg/narrative.html. Acesso em: 7 Apr.

  37. Transitions Checklist: Young Adults with Neurologic Disorders. ACT HVC pediatric to adult care transition project. Disponível em: https://www.childneurologyfoundation.org/wp-content/uploads/2017/08/B_TransitionChecklist.pdf. Acesso em: 7 Apr.

  38. Traynor BJ, Alexander M, Corr B, Frost E, et al. Effect of a multidisciplinary amyotrophic lateral sclerosis (ALS) clinic on ALS survival: a population based study, 1996-2000. J Neurol Neurosurg Psychiatry. 2003;74(9):1258–61.

    Article  CAS  Google Scholar 

  39. Trout CJ, Case LE, Clemens PR, Mcarthur A, et al. A transition toolkit for Duchenne muscular dystrophy. Pediatrics. 2018;142(Suppl 2):S110–s117.

    Article  Google Scholar 

  40. Van Lierde A, Menni F, Bedeschi MF, Natacci F, et al. Healthcare transition in patients with rare genetic disorders with and without developmental disability: neurofibromatosis 1 and Williams-Beuren syndrome. Am J Med Genet A. 2013;161a(7):1666–74.

    Article  Google Scholar 

  41. Wan HWY, Carey KA, D’silva A, Kasparian NA, et al. “Getting ready for the adult world”: how adults with spinal muscular atrophy perceive and experience healthcare, transition and well-being. Orphanet J Rare Dis. 2019;14(1):74.

    Article  Google Scholar 

  42. Who is eligible for Medicare? Disponível em: https://www.hhs.gov/answers/medicare-and-medicaid/who-is-elibible-for-medicare/index.html. Acesso em: 7 Apr.

  43. Woodbury AS. Living with DM1: my family’s story. 2017.

    Google Scholar 

  44. Young Adult Coverage. About the ACA. Disponível em: https://www.hhs.gov/healthcare/about-the-aca/young-adult-coverage/index.html. Acesso em: 7 Apr.

  45. Zbikowski SM, Klesges RC, Robinson LA, Alfano CM. Risk factors for smoking among adolescents with asthma. J Adolesc Health. 2002;30(4):279–87.

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Internal Medicine-Pediatrics, University of Utah, Salt Lake City, UT, USA

    Kathleen S. Irby

  2. Internal Medicine Division of Pulmonary, Critical Care & Occupational Pulmonary, University of Utah, Salt Lake City, UT, USA

    Jeanette P. Brown

Authors
  1. Kathleen S. Irby
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Jeanette P. Brown
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Jeanette P. Brown .

Editor information

Editors and Affiliations

  1. Division of Pulmonary, Critical Care,Occupational, and Sleep Medicine, Indiana University School of Medicine, Indianapolis, IN, USA

    Cynthia D. Brown

  2. Department of Pulmonary, Critical Care, and Sleep Medicine, Wyoming Medical Center, Casper, WY, USA

    Erin Crowley

Rights and permissions

Reprints and permissions

Copyright information

© 2021 Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Irby, K.S., Brown, J.P. (2021). Transition Care for Adolescents and Young Adults with Neuromuscular Disease and Chronic Pulmonary Care Needs. In: Brown, C.D., Crowley, E. (eds) Transitioning Care from Pediatric to Adult Pulmonology. Respiratory Medicine. Humana, Cham. https://doi.org/10.1007/978-3-030-68688-8_8

Download citation

  • DOI: https://doi.org/10.1007/978-3-030-68688-8_8

  • Published:

  • Publisher Name: Humana, Cham

  • Print ISBN: 978-3-030-68687-1

  • Online ISBN: 978-3-030-68688-8

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics

Search

Navigation