Transition and Lifespan Care for Patients with Cerebral Palsy

  • Rita AyyangarEmail author
  • David Roye
  • Sara Silbert
  • Christian Treat


A unifying goal in care of cerebral palsy (CP) for the patient across the lifespan is the enhancement of quality of life. We begin by defining quality of life and illustrate how society’s notion of care of individuals with CP and other disabilities has changed and shaped modern practice today. Then, we address some of the key considerations important to enhancing the quality of life for individuals with CP throughout their lifespan. We discuss the importance of focusing on key transitional periods as opportunities for improving quality of life. We will discuss the impacts of school and mental health among other factors on the quality of life of those with CP. Finally, we highlight the role that palliative care can play throughout the lifespan to ensure that the focus remains on sustaining a good quality of life.


Quality of life Transitional care Goals Lifespan care Palliative care Mental health 


  1. 1.
    World Health Organization. WHO Definition of Palliative Care. 2012. Accessed April 19 2019.
  2. 2.
    Karimi M, Brazier J. Health, health-related quality of life, and quality of life: what is the difference? Pharmacoeconomics. 2016;34(7):645–9.PubMedGoogle Scholar
  3. 3.
    Vargus-Adams J. Health-related quality of life in childhood cerebral palsy. Arch Phys Med Rehabil. 2005;86(5):940–5.PubMedGoogle Scholar
  4. 4.
    Morgan PE, Soh S-E, McGinley JL. Health-related quality of life of ambulant adults with cerebral palsy and its association with falls and mobility decline: a preliminary cross sectional study. Health Qual Life Outcomes. 2014;12(1):132.PubMedPubMedCentralGoogle Scholar
  5. 5.
    Alriksson-Schmidt AJ, Jarl J, Rodby-Bousquet E. Health-related quality of life in adults with cerebral palsy. Develop Med Child Neurol. 2018;60(S3):104–5. Scholar
  6. 6.
    Spaulding LS, Pratt SM. A review and analysis of the history of special education and disability advocacy in the United States. Am Educat Hist J. 2015;42(1/2):91.Google Scholar
  7. 7.
    Winzer MA. The history of special education: from isolation to integration: Gallaudet University Press; 1993.Google Scholar
  8. 8.
    Poon-McBrayer KF, Lian M-GJ. Special needs education: children with exceptionalities: Chinese University Press; 2002.Google Scholar
  9. 9.
    Itard J-MG (1962) The wild boy of Aveyron.Google Scholar
  10. 10.
    Mahendra B. Subnormality revisited in early 19th century France. J Ment Defic Res. 1985;29:391–401.Google Scholar
  11. 11.
    Hamburger AM. The cripple and his place in the community. Ann Am Acad Pol Soc Sci. 1918;77(1):36–44.Google Scholar
  12. 12.
    Levine DB. The hospital for the ruptured and crippled, entering the twentieth century, ca. 1900 to 1912. HSS J. 2007;3(1):2–12.PubMedPubMedCentralGoogle Scholar
  13. 13.
    Levine DB. Hospital for special surgery: origin and early history first site 1863–1870. HSS J. 2005;1(1):3–8.PubMedPubMedCentralGoogle Scholar
  14. 14.
    Radbill SX. Hospitals and pediatrics, 1776–1976. Bull Hist Med. 1979;53(2):286–91.PubMedGoogle Scholar
  15. 15.
    McMurtrie DC. The care of crippled. Children in the United States. JBJS. 1912;2(4):527–56.Google Scholar
  16. 16.
    Braddock D, Hemp R, Rizzolo MC, Tanis ES, Haffer L, Lulinski A, Wu J. State of the states in developmental disabilities 2013: the great recession and its aftermath. Washington, DC: American Association on Intellectual and Developmental Disabilities; 2013.Google Scholar
  17. 17.
    Pfeiffer D. Overview of the disability movement: history, legislative record, and political implications. Policy Stud J. 1993;21(4):724–34.Google Scholar
  18. 18.
    Grossberg M. From feeble-minded to mentally retarded: child protection and the changing place of disabled children in the mid-twentieth century United States. Paedagog Hist. 2011;47(6):729–47.Google Scholar
  19. 19.
    Martin EW, Martin R, Terman DL. The legislative and litigation history of special education. Future Child. 1996;6:25–39.PubMedGoogle Scholar
  20. 20.
    Individuals with Disabilities Education Act (2004) vol 20 U.S. Code.Google Scholar
  21. 21.
    American with Disabilities Act (1990) vol 42. U.S. Code.Google Scholar
  22. 22.
    Lipkin PH, Okamoto J. The Individuals with Disabilities Education Act (IDEA) for children with special educational needs. Pediatrics. 2015;136(6):e1650–62.PubMedGoogle Scholar
  23. 23.
    Rehabilitation Act Amendments of 1992 (1992) vol 5482. House of Representatives.Google Scholar
  24. 24.
    Schwartz L, Engel JM, Jensen MP. Pain in persons with cerebral palsy. Arch Phys Med Rehabil. 1999;80(10):1243–6.PubMedGoogle Scholar
  25. 25.
    Boldingh EJ, Jacobs-van der Bruggen MA, Bos CF, Lankhorst GJ, Bouter LM. Determinants of hip pain in adult patients with severe cerebral palsy. J Pediatr Orthop B. 2005;14(2):120–5.PubMedGoogle Scholar
  26. 26.
    Cathels BA, Reddihough DS. The health care of young adults with cerebral palsy. Med J Aust. 1993;159(7):444–6.PubMedGoogle Scholar
  27. 27.
    Moreau M, Drummond DS, Rogala E, Ashworth A, Porter T. Natural history of the dislocated hip in spastic cerebral palsy. Develop Med Child Neurol. 1979;21(6):749–53.PubMedGoogle Scholar
  28. 28.
    Wynter M, Gibson N, Kentish M, Love S, Thomason P, Kerr Graham H. The development of Australian standards of care for hip surveillance in children with cerebral palsy: how did we reach consensus? J Pediatr Rehabil Med. 2011;4(3):171–82.PubMedGoogle Scholar
  29. 29.
    Dobson F, Boyd R, Parrott J, Nattrass G, Graham H. Hip surveillance in children with cerebral palsy: impact on the surgical management of spastic hip disease. J Bone Joint Surg. 2002;84(5):720–6.Google Scholar
  30. 30.
    Wynter M, Gibson N, Willoughby KL, Love S, Kentish M, Thomason P, Graham HK, Group NHSW. Australian hip surveillance guidelines for children with cerebral palsy: 5-year review. Develop Med Child Neurol. 2015;57(9):808–20.PubMedGoogle Scholar
  31. 31.
    Team AHSCP. Hip surveillance in cerebral palsy. American Academy for Cerebral Palsy and Developmental Medicine. 2018. Accessed July 17 2019.
  32. 32.
    Ramstad K, Terjesen T. Hip pain is more frequent in severe hip displacement: a population-based study of 77 children with cerebral palsy. J Pediatr Orthop B. 2016;25(3):217–21.PubMedGoogle Scholar
  33. 33.
    Hodgkinson I, Jindrich M, Duhaut P, Vadot J, Metton G, Berard C. Hip pain in 234 non-ambulatory adolescents and young adults with cerebral palsy: a cross-sectional multicentre study. Dev Med Child Neurol. 2001;43(12):806–8.PubMedGoogle Scholar
  34. 34.
    Morrell DS, Pearson JM, Sauser DD. Progressive bone and joint abnormalities of the spine and lower extremities in cerebral palsy. Radiographics. 2002;22(2):257–68.PubMedGoogle Scholar
  35. 35.
    O’Connell PA, D’Souza L, Dudeney S, Stephens M. Foot deformities in children with cerebral palsy. J Pediatr Orthop. 1998;18(6):743–7.PubMedGoogle Scholar
  36. 36.
    Saito N, Ebara S, Ohotsuka K, Kumeta H, Takaoka K. Natural history of scoliosis in spastic cerebral palsy. Lancet. 1998;351(9117):1687–92.PubMedGoogle Scholar
  37. 37.
    Sewell MD, Malagelada F, Wallace C, Gibson A, Noordeen H, Tucker S, Molloy S, Lehovsky J. A preliminary study to assess whether spinal fusion for scoliosis improves carer-assessed quality of life for children with GMFCS level IV or V cerebral palsy. J Pediatr Orthop. 2016;36(3):299–304.PubMedGoogle Scholar
  38. 38.
    Mikawa Y, Watanabe R, Shikata J. Cervical myelo-radiculopathy in athetoid cerebral palsy. Arch Orthop Trauma Surg. 1997;116(1–2):116–8.PubMedGoogle Scholar
  39. 39.
    Friedrich M. Depression is the leading cause of disability around the world. JAMA. 2017;317(15):1517.PubMedGoogle Scholar
  40. 40.
    Goodman R, Graham P. Psychiatric problems in children with hemiplegia: cross sectional epidemiological survey. BMJ. 1996;312(7038):1065–9.PubMedPubMedCentralGoogle Scholar
  41. 41.
    Downs J, Blackmore AM, Epstein A, Skoss R, Langdon K, Jacoby P, Whitehouse AJ, Leonard H, Rowe PW, Glasson EJ. The prevalence of mental health disorders and symptoms in children and adolescents with cerebral palsy: a systematic review and meta-analysis. Develop Med Child Neurol. 2018;60(1):30–8.PubMedGoogle Scholar
  42. 42.
    Bjorgaas H, Elgen I, Boe T, Hysing M. Mental health in children with cerebral palsy: does screening capture the complexity? Sci World J. 2013;1–7.Google Scholar
  43. 43.
    Whitney DG, Warschausky SA, Peterson MD. Mental health disorders and physical risk factors in children with cerebral palsy: a cross-sectional study. Develop Med Child Neurol. 2019;61(5):579–85.PubMedGoogle Scholar
  44. 44.
    Rosenfeld M, Friedman JH. Cervical stenosis and dystonic cerebral palsy. Mov Disord. 1999;14(1):194–5.PubMedGoogle Scholar
  45. 45.
    White PH, Cooley WC, Pediatrics AAo, Physicians AAoF. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2018;142(5):e20182587.PubMedGoogle Scholar
  46. 46.
    Murphy KP. Cerebral palsy lifetime care - four musculoskeletal conditions. Dev Med Child Neurol. 2009;51(Suppl 4):30–7. Scholar
  47. 47.
    Matsumoto HR, Elizabeth D, Roye BD, Hyman JE, Vitale MG, Roye DP. Hospitalization among patients with cerebral palsy in the United States: an exploration of 37 years of inpatient care. Paper presented at the American Academy for Cerebral Palsy and Developmental Medicine Las Vegas, Nevada, October 12, 2011.Google Scholar
  48. 48.
    Dimes Mo. Medical References: Cerebral Palsy. 2006. Accessed July 16 2019.
  49. 49.
    Kent RM. Chapter 38 – Cerebral palsy. In: Barnes MP, Good DC, editors. Handbook of clinical neurology, vol 110. Elsevier. 2013. p 443–59. doi:
  50. 50.
    Cooley WC, Sagerman PJ. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011;128(1):182–200.PubMedGoogle Scholar
  51. 51.
    Brooks JC, Strauss DJ, Shavelle RM, Tran LM, Rosenbloom L, Wu YW. Recent trends in cerebral palsy survival. Part II: individual survival prognosis. Develop Med Child Neurol. 2014;56(11):1065–71.PubMedGoogle Scholar
  52. 52.
    Disabilities CoD. History of Education. 2007. Accessed April 19 2019.
  53. 53.
    Colver A, Rapp M, Eisemann N, Ehlinger V, Thyen U, Dickinson HO, Parkes J, Parkinson K, Nystrand M, Fauconnier J. Self-reported quality of life of adolescents with cerebral palsy: a cross-sectional and longitudinal analysis. Lancet. 2015;385(9969):705–16.PubMedPubMedCentralGoogle Scholar
  54. 54.
    Welsh B, Jarvis S, Hammal D, Colver A. How might districts identify local barriers to participation for children with cerebral palsy? Public Health. 2006;120(2):167–75.PubMedGoogle Scholar
  55. 55.
    McDougall J, Wright V, Rosenbaum P. The ICF model of functioning and disability: incorporating quality of life and human development. Dev Neurorehabil. 2010;13(3):204–11.PubMedGoogle Scholar
  56. 56.
    Pivik J, McComas J, Laflamme M. Barriers and facilitators to inclusive education. Except Child. 2002;69(1):97–107.Google Scholar
  57. 57.
    Comptroller NYC. Service Denied: Accessibility and the New York City Subway System. 2018.
  58. 58.
    Langkamp DL, McManus MD, Blakemore SD. Telemedicine for children with developmental disabilities: a more effective clinical process than office-based care. Telemed e-Health. 2015;21(2):110–4.Google Scholar
  59. 59.
    King S, Teplicky R, King G, Rosenbaum P. Family-centered service for children with cerebral palsy and their families: a review of the literature. In: Seminars in pediatric neurology, vol 1. Elsevier. 2004. p. 78–86.Google Scholar
  60. 60.
    Law M, Hanna S, King G, Hurley P, King S, Kertoy M, Rosenbaum P. Factors affecting family-centred service delivery for children with disabilities. Child Care Health Dev. 2003;29(5):357–66.PubMedGoogle Scholar
  61. 61.
    Pacific WROftW. Integrating poverty and gender into health programmes: a sourcebook for health professionals (sexual and reproductive health). Geneva: World Health Organization; 2008.Google Scholar
  62. 62.
    Esmail S, Darry K, Walter A, Knupp H. Attitudes and perceptions towards disability and sexuality. Disabil Rehabil. 2010;32(14):1148–55.PubMedGoogle Scholar
  63. 63.
    Hahn H. The social component of sexuality and disability: some problems and proposals. Sex Disabil. 1981;4(4):220–33.Google Scholar
  64. 64.
    Anderson P, Kitchin R. Disability, space and sexuality: access to family planning services. Soc Sci Med. 2000;51(8):1163–73.PubMedGoogle Scholar
  65. 65.
    Nosek MA, Hughes RB, Robinson-Whelen S, Taylor HB, Howland CA. Physical activity and nutritional behaviors of women with physical disabilities: physical, psychological, social, and environmental influences. Womens Health Issues. 2006;16(6):323–33.PubMedGoogle Scholar
  66. 66.
    Strauss D, Cable W, Shavelle R. Causes of excess mortality in cerebral palsy. Dev Med Child Neurol. 1999;41(9):580–5.PubMedGoogle Scholar
  67. 67.
    Altman BM, Bernstein A. Disability and health in the United States, 2001–2005. 2008.Google Scholar
  68. 68.
    Iezzoni LI, Kilbridge K, Park ER. Physical access barriers to care for diagnosis and treatment of breast cancer among women with mobility impairments. In: Oncology nursing forum, vol 6. NIH Public Access. 2010. p 711.Google Scholar
  69. 69.
    Iezzoni LI, Pendo E. Accessibility of medical diagnostic equipment-implications for people with disability. N Engl J Med. 2018;378(15):1371.PubMedGoogle Scholar
  70. 70.
    Nosek MA, Young ME, RINTALA DH, Howland CA, Foley CC, Bennett JL. Barriers to reproductive health maintenance among women with physical disabilities. J Women's Health. 1995;4(5):505–18.Google Scholar
  71. 71.
    Smeltzer SC, Mitra M, Long-Bellil L, Iezzoni LI, Smith LD. Obstetric clinicians’ experiences and educational preparation for caring for pregnant women with physical disabilities: a qualitative study. Disabil Health J. 2018;11(1):8–13.PubMedGoogle Scholar
  72. 72.
    Bloom TL, Mosher W, Alhusen J, Lantos H, Hughes RB. Fertility desires and intentions among US women by disability status: findings from the 2011–2013 national survey of family growth. Matern Child Health J. 2017;21(8):1606–15.PubMedPubMedCentralGoogle Scholar
  73. 73.
    Cooper E, Guillebaud J. Sexuality and disability: a guide for everyday practice: CRC Press; 2017.Google Scholar
  74. 74.
    Palliative M, Committee OHC. Pediatric palliative care and hospice care commitments, guidelines, and recommendations. Pediatrics. 2013;132(5):966.Google Scholar
  75. 75.
    Wolfe J, Hinds P, Sourkes B. Textbook of interdisciplinary pediatric palliative care E-book: expert consult Premium Edition. Elsevier Health Sciences: Saunders, USA: 2011.Google Scholar
  76. 76.
    Feudtner C, Womer J, Augustin R, Remke S, Wolfe J, Friebert S, Weissman D. Pediatric palliative care programs in children’s hospitals: a cross-sectional national survey. Pediatrics. 2013;132(6):1063–70.PubMedGoogle Scholar
  77. 77.
    Dumanovsky T, Augustin R, Rogers M, Lettang K, Meier DE, Morrison RS. The growth of palliative care in US hospitals: a status report. J Palliat Med. 2016;19(1):8–15.PubMedPubMedCentralGoogle Scholar
  78. 78.
    Kuenzle C. Children and youth with complex cerebral palsy: care and management: Georg Thieme Verlag KG; Mac Keith Press, London; 2019.Google Scholar
  79. 79.
    Bogetz JF, Hauer J. Certainty of decisions: a process-based model for decision making for children with severe neurological impairment. Clin Pediatr. 2018;57(10):1227–31.Google Scholar
  80. 80.
    Svedberg LE, Englund E, Malker H, Stener-Victorin E. Parental perception of cold extremities and other accompanying symptoms in children with cerebral palsy. Eur J Paediatr Neurol. 2008;12(2):89–96.PubMedGoogle Scholar
  81. 81.
    Parkinson KN, Dickinson HO, Arnaud C, Lyons A, Colver A. Pain in young people aged 13 to 17 years with cerebral palsy: cross-sectional, multicentre European study. Arch Dis Child. 2013;98(6):434–40. Scholar
  82. 82.
    Jahnsen R, Villien L, Aamodt G, Stanghelle J, Holm I. Musculoskeletal pain in adults with cerebral palsy compared with the general population. J Rehabil Med. 2004;36(2):78–84.PubMedGoogle Scholar
  83. 83.
    Hauer JM. Caring for children who have severe neurological impairment: a life with grace: Baltimore, Johns Hopkins University Press; 2013.Google Scholar
  84. 84.
    Van Der Slot WM, Nieuwenhuijsen C, Van Den Berg-Emons RJ, Bergen MP, Hilberink SR, Stam HJ, Roebroeck ME. Chronic pain, fatigue, and depressive symptoms in adults with spastic bilateral cerebral palsy. Dev Med Child Neurol. 2012;54(9):836–42. Scholar
  85. 85.
    Yamaguchi R, Nicholson Perry K, Hines M. Pain, pain anxiety and emotional and behavioural problems in children with cerebral palsy. Disabil Rehabil. 2014;36(2):125–30.PubMedGoogle Scholar
  86. 86.
    Lauder G, White M. Neuropathic pain following multilevel surgery in children with cerebral palsy: a case series and review. Pediatr Anesth. 2005;15(5):412–20.Google Scholar
  87. 87.
    Hauer J, Houtrow AJ. Pain assessment and treatment in children with significant impairment of the central nervous system. Pediatrics. 2017;139(6):e20171002.PubMedGoogle Scholar
  88. 88.
    World Health Organization. WHO guidelines on the pharmacological treatment of persisting pain in children with medical illnesses: World Health Organization; 2012.;sequence. Accessed May 10 2020.
  89. 89.
    Hauer J. Feeding intolerance in children with severe impairment of the central nervous system: strategies for treatment and prevention. Children. 2017;5(1):1.PubMedCentralGoogle Scholar
  90. 90.
    Neuman A, Desai B, Glass D, Diab W. Superior mesenteric artery syndrome in a patient with cerebral palsy. Case Rep Med. 2014;2014Google Scholar
  91. 91.
    Delgadillo X, Belpaire-Dethiou M-C, Chantrain C, Clapuyt P, Veyckemans F, De Goyet JDV, Otte J-B, Reding R. Arteriomesenteric syndrome as a cause of duodenal obstruction in children with cerebral palsy. J Pediatr Surg. 1997;32(12):1721–3.PubMedGoogle Scholar
  92. 92.
    Hauer JM, Wolfe J. Supportive and palliative care of children with metabolic and neurological diseases. Curr Opin Support Palliat Care. 2014;8(3):296–302.PubMedGoogle Scholar
  93. 93.
    Manworren RC, Stinson J. Pediatric pain measurement, assessment, and evaluation. In: Seminars in pediatric neurology, vol 3. Elsevier. 2016. p. 189–200.Google Scholar
  94. 94.
    Hadden KL, von Baeyer CL. Global and specific behavioral measures of pain in children with cerebral palsy. Clin J Pain. 2005;21(2):140–6.PubMedGoogle Scholar
  95. 95.
    Buckman RA. Breaking bad news: the SPIKES strategy. Community Oncol. 2005;2(2):138–42.Google Scholar

Copyright information

© Springer Nature Switzerland AG 2020

Authors and Affiliations

  • Rita Ayyangar
    • 1
    Email author
  • David Roye
    • 2
    • 3
  • Sara Silbert
    • 4
  • Christian Treat
    • 5
  1. 1.Department of Physical Medicine and RehabilitationPediatric Rehabilitation Medicine, Faculty, Pediatric Palliative Care Stepping Stones Program, Michigan MedicineAnn ArborUSA
  2. 2.St. Giles Professor of Pediatric Orthopedic Surgery, New York Presbyterian Morgan Stanley Children’s HospitalNew YorkUSA
  3. 3.Weinberg Family Cerebral Palsy CenterNew YorkUSA
  4. 4.Fellow, Pediatric Palliative Care Stepping Stones Program, Michigan MedicineAnn ArborUSA
  5. 5.Vagelos College of Physicians and Surgeons, Columbia University Irving Medical CenterNew YorkUSA

Personalised recommendations