Ann Rehabil Med.  2019 Jun;43(3):241-249. 10.5535/arm.2019.43.3.241.

Emerging Issues in Cerebral Palsy Associated With Aging: A Physiatrist Perspective

• Yi YG
• Jung SH
• Bang MS

• KMID: 2453913
• DOI: http://doi.org/10.5535/arm.2019.43.3.241

Abstract

The population of adults diagnosed with cerebral palsy (CP) is increasing along with the survival rate of children born with the disability. Adults with CP need health services for the continued monitoring and management of their condition. Moreover, the development of additional health problems in adulthood increases the need for ongoing access to health services. Adults with CP manifest a higher rate of chronic health conditions and eventual decline in strength and functional reserve, deterioration in physical activity, increased risk of musculoskeletal complications, and gradual changes in swallowing ability. They are also reported to exhibit difficulty engaging socially and have a low health-related quality of life (QOL). However, there are a large number of adults with CP who cannot access medical services adequately and are therefore not effectively treated. To overcome these apparent challenges, we need to fully comprehend the healthcare needs of adults with CP to develop adult-focused health services. Further research is needed regarding the impact of physical activity, nutrition, sarcopenia, myeloradiculopathy, and swallowing function on QOL.

Keyword

Cerebral palsy; Adult; Quality of life; Deterioration

MeSH Terms

Adult
Aging*
Cerebral Palsy*
Child
Deglutition
Delivery of Health Care
Health Services
Humans
Motor Activity
Quality of Life
Sarcopenia
Survival Rate

Reference

1. Maenner MJ, Blumberg SJ, Kogan MD, Christensen D, Yeargin-Allsopp M, Schieve LA. Prevalence of cerebral palsy and intellectual disability among children identified in two U.S. National Surveys, 2011-2013. Ann Epidemiol. 2016; 26:222–6.

2. Park MS, Kim SJ, Chung CY, Kwon DG, Choi IH, Lee KM. Prevalence and lifetime healthcare cost of cerebral palsy in South Korea. Health Policy. 2011; 100:234–8.

3. van Haastert IC, Groenendaal F, Uiterwaal CS, Termote JU, van der Heide-Jalving M, Eijsermans MJ, et al. Decreasing incidence and severity of cerebral palsy in prematurely born children. J Pediatr. 2011; 159:86–91. e1.

4. Mutch L, Alberman E, Hagberg B, Kodama K, Perat MV. Cerebral palsy epidemiology: where are we now and where are we going? Dev Med Child Neurol. 1992; 34:547–51.

5. Westbom L, Bergstrand L, Wagner P, Nordmark E. Survival at 19 years of age in a total population of children and young people with cerebral palsy. Dev Med Child Neurol. 2011; 53:808–14.

6. Himmelmann K, Sundh V. Survival with cerebral palsy over five decades in western Sweden. Dev Med Child Neurol. 2015; 57:762–7.

7. Murphy KP, Molnar GE, Lankasky K. Medical and functional status of adults with cerebral palsy. Dev Med Child Neurol. 1995; 37:1075–84.

8. Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions: a position paper of the Society for Adolescent Medicine. J Adolesc Health. 1993; 14:570–6.

9. Strauss D, Cable W, Shavelle R. Causes of excess mortality in cerebral palsy. Dev Med Child Neurol. 1999; 41:580–5.

10. Haak P, Lenski M, Hidecker MJ, Li M, Paneth N. Cerebral palsy and aging. Dev Med Child Neurol. 2009; 51 Suppl 4:16–23.

11. Young NL, Steele C, Fehlings D, Jutai J, Olmsted N, Williams JI. Use of health care among adults with chronic and complex physical disabilities of childhood. Disabil Rehabil. 2005; 27:1455–60.

12. Young NL. The transition to adulthood for children with cerebral palsy: what do we know about their health care needs? J Pediatr Orthop. 2007; 27:476–9.

13. Freeman M, Stewart D, Cunningham CE, Gorter JW. “If I had been given that information back then”: An interpretive description exploring the information needs of adults with cerebral palsy looking back on their transition to adulthood. Child Care Health Dev. 2018; 44:689–96.

14. Gorter JW. Transition to adult-oriented health care: perspectives of youth and adults with complex physical disabilities. Phys Occup Ther Pediatr. 2009; 29:362–6.

15. Peterson MD, Ryan JM, Hurvitz EA, Mahmoudi E. Chronic conditions in adults with cerebral palsy. JAMA. 2015; 314:2303–5.

16. Cremer N, Hurvitz EA, Peterson MD. Multimorbidity in middle-aged adults with cerebral palsy. Am J Med. 2017; 130:744. e9-744.e15.

17. Whitney DG, Hurvitz EA, Ryan JM, Devlin MJ, Caird MS, French ZP, et al. Noncommunicable disease and multimorbidity in young adults with cerebral palsy. Clin Epidemiol. 2018; 10:511–9.

18. van der Slot WM, Roebroeck ME, Nieuwenhuijsen C, Bergen MP, Stam HJ, Burdorf A, et al. Cardiovascular disease risk in adults with spastic bilateral cerebral palsy. J Rehabil Med. 2013; 45:866–72.

19. Peterson MD, Kamdar N, Hurvitz EA. Age-related trends in cardiometabolic disease among adults with cerebral palsy. Dev Med Child Neurol. 2019; 61:484–9.

20. McPhee PG, Gorter JW, Cotie LM, Timmons BW, Bentley T, MacDonald MJ. Associations of non-invasive measures of arterial structure and function, and traditional indicators of cardiovascular risk in adults with cerebral palsy. Atherosclerosis. 2015; 243:462–5.

21. McPhee PG, Gorter JW, Cotie LM, Timmons BW, Bentley T, MacDonald MJ. Descriptive data on cardiovascular and metabolic risk factors in ambulatory and non-ambulatory adults with cerebral palsy. Data Brief. 2015; 5:967–70.

22. Van Der Slot WM, Nieuwenhuijsen C, Van Den Berg-Emons RJ, Bergen MP, Hilberink SR, Stam HJ, et al. Chronic pain, fatigue, and depressive symptoms in adults with spastic bilateral cerebral palsy. Dev Med Child Neurol. 2012; 54:836–42.

23. McPhee PG, Brunton LK, Timmons BW, Bentley T, Gorter JW. Fatigue and its relationship with physical activity, age, and body composition in adults with cerebral palsy. Dev Med Child Neurol. 2017; 59:367–73.

24. Marciniak CM, Lee J, Jesselson M, Gaebler-Spira D. Cross-sectional study of bowel symptoms in adults with cerebral palsy: prevalence and impact on quality of life. Arch Phys Med Rehabil. 2015; 96:2176–83.

25. Ryan JM, Crowley VE, Hensey O, Broderick JM, McGahey A, Gormley J. Habitual physical activity and cardiometabolic risk factors in adults with cerebral palsy. Res Dev Disabil. 2014; 35:1995–2002.

26. Slaman J, Roebroeck M, van der Slot W, Twisk J, Wensink A, Stam H, et al. Can a lifestyle intervention improve physical fitness in adolescents and young adults with spastic cerebral palsy? A randomized controlled trial. Arch Phys Med Rehabil. 2014; 95:1646–55.

27. Slaman J, van den Berg-Emons HJ, van Meeteren J, Twisk J, van Markus F, Stam HJ, et al. A lifestyle intervention improves fatigue, mental health and social support among adolescents and young adults with cerebral palsy: focus on mediating effects. Clin Rehabil. 2015; 29:717–27.

28. Thorpe D. The role of fitness in health and disease: status of adults with cerebral palsy. Dev Med Child Neurol. 2009; 51 Suppl 4:52–8.

29. Moll LR, Cott CA. The paradox of normalization through rehabilitation: growing up and growing older with cerebral palsy. Disabil Rehabil. 2013; 35:1276–83.

30. Andersson C, Mattsson E. Adults with cerebral palsy: a survey describing problems, needs, and resources, with special emphasis on locomotion. Dev Med Child Neurol. 2001; 43:76–82.

31. Balandin S, Morgan J. Adults with cerebral palsy: what’s happening? J Intellect Dev Disabil. 1997; 22:109–4.

32. Park MW, Kim WS, Bang MS, Lim JY, Shin HI, Leigh JH, et al. Needs for medical and rehabilitation services in adults with cerebral palsy in Korea. Ann Rehabil Med. 2018; 42:465–72.

33. Claridge EA, McPhee PG, Timmons BW, Martin Ginis KA, Macdonald MJ, Gorter JW. Quantification of physical activity and sedentary time in adults with cerebral palsy. Med Sci Sports Exerc. 2015; 47:1719–26.

34. van der Slot WM, Roebroeck ME, Landkroon AP, Terburg M, Berg-Emons RJ, Stam HJ. Everyday physical activity and community participation of adults with hemiplegic cerebral palsy. Disabil Rehabil. 2007; 29:179–89.

35. Ryan JM, Cassidy EE, Noorduyn SG, O’Connell NE. Exercise interventions for cerebral palsy. Cochrane Database Syst Rev. 2017; 6:CD011660.

36. Gorter JW. Physical activity interventions for children and young people with cerebral palsy. Dev Med Child Neurol. 2017; 59:990–1.

37. Verschuren O, Smorenburg AR, Luiking Y, Bell K, Barber L, Peterson MD. Determinants of muscle preservation in individuals with cerebral palsy across the lifespan: a narrative review of the literature. J Cachexia Sarcopenia Muscle. 2018; 9:453–64.

38. Peterson MD, Haapala HJ, Chaddha A, Hurvitz EA. Abdominal obesity is an independent predictor of serum 25-hydroxyvitamin D deficiency in adults with cerebral palsy. Nutr Metab (Lond). 2014; 11:22.

39. Whitney DG, Hurvitz EA, Devlin MJ, Caird MS, French ZP, Ellenberg EC, et al. Age trajectories of musculoskeletal morbidities in adults with cerebral palsy. Bone. 2018; 114:285–91.

40. Mus-Peters CT, Huisstede BM, Noten S, Hitters MW, van der Slot WM, van den Berg-Emons RJ. Low bone mineral density in ambulatory persons with cerebral palsy? A systematic review. Disabil Rehabil. 2018; May. 22. [Epub]. https://doi.org/10.1080/09638288.2018.1470261.

41. Peterson MD, Zhang P, Haapala HJ, Wang SC, Hurvitz EA. Greater adipose tissue distribution and diminished spinal musculoskeletal density in adults with cerebral palsy. Arch Phys Med Rehabil. 2015; 96:1828–33.

42. Trinh A, Wong P, Fahey MC, Brown J, Churchyard A, Strauss BJ, et al. Musculoskeletal and endocrine health in adults with cerebral palsy: new opportunities for intervention. J Clin Endocrinol Metab. 2016; 101:1190–7.

43. Barrett RS, Lichtwark GA. Gross muscle morphology and structure in spastic cerebral palsy: a systematic review. Dev Med Child Neurol. 2010; 52:794–804.

44. Tosi LL, Maher N, Moore DW, Goldstein M, Aisen ML. Adults with cerebral palsy: a workshop to define the challenges of treating and preventing secondary musculoskeletal and neuromuscular complications in this rapidly growing population. Dev Med Child Neurol. 2009; 51 Suppl 4:2–11.

45. Benner JL, Hilberink SR, Veenis T, Stam HJ, van der Slot WM, Roebroeck ME. Long-term deterioration of perceived health and functioning in adults with cerebral palsy. Arch Phys Med Rehabil. 2017; 98:2196–2205. e1.

46. Bottos M, Feliciangeli A, Sciuto L, Gericke C, Vianello A. Functional status of adults with cerebral palsy and implications for treatment of children. Dev Med Child Neurol. 2001; 43:516–28.

47. Parkinson KN, Dickinson HO, Arnaud C, Lyons A, Colver A; SPARCLE group. Pain in young people aged 13 to 17 years with cerebral palsy: cross-sectional, multicentre European study. Arch Dis Child. 2013; 98:434–40.

48. Verschuren O, McPhee P, Rosenbaum P, Gorter JW. The formula for health and well-being in individuals with cerebral palsy: physical activity, sleep, and nutrition. Dev Med Child Neurol. 2016; 58:989–90.

49. Slaman J, Bussmann J, van der Slot WM, Stam HJ, Roebroeck ME, van den Berg-Emons RJ, et al. Physical strain of walking relates to activity level in adults with cerebral palsy. Arch Phys Med Rehabil. 2013; 94:896–901.

50. Park EY, Kim WH. Prevalence of secondary impairments of adults with cerebral palsy according to gross motor function classification system. J Phys Ther Sci. 2017; 29:266–9.

51. Jameson R, Rech C, Garreau de Loubresse C. Cervical myelopathy in athetoid and dystonic cerebral palsy: retrospective study and literature review. Eur Spine J. 2010; 19:706–12.

52. Furuya T, Yamazaki M, Okawa A, Misawa S, Sakuma T, Takahashi H, et al. Cervical myelopathy in patients with athetoid cerebral palsy. Spine (Phila Pa 1976). 2013; 38:E151–7.

53. Harada T, Ebara S, Anwar MM, Okawa A, Kajiura I, Hiroshima K, et al. The cervical spine in athetoid cerebral palsy: a radiological study of 180 patients. J Bone Joint Surg Br. 1996; 78:613–9.

54. Monbaliu E, Himmelmann K, Lin JP, Ortibus E, Bonouvrie L, Feys H, et al. Clinical presentation and management of dyskinetic cerebral palsy. Lancet Neurol. 2017; 16:741–9.

55. Lee YJ, Chung DS, Kim JT, Bong HJ, Han YM, Park YS. Surgical treatments for cervical spondylotic myelopathy associated with athetoid cerebral palsy. J Korean Neurosurg Soc. 2008; 43:294–9.

56. Watanabe K, Hirano T, Katsumi K, Ohashi M, Shoji H, Yamazaki A, et al. Surgical outcomes of posterior spinal fusion alone using cervical pedicle screw constructs for cervical disorders associated with athetoid cerebral palsy. Spine (Phila Pa 1976). 2017; 42:1835–43.

57. Yi YG, Kim K, Yi Y, Choi YA, Leigh JH, Bang MS. Botulinum toxin type A injection for cervical dystonia in adults with dyskinetic cerebral palsy. Toxins (Basel). 2018; 10:E203.

58. Somerville H, Tzannes G, Wood J, Shun A, Hill C, Arrowsmith F, et al. Gastrointestinal and nutritional problems in severe developmental disability. Dev Med Child Neurol. 2008; 50:712–6.

59. Balandin S, Hemsley B, Hanley L, Sheppard JJ. Understanding mealtime changes for adults with cerebral palsy and the implications for support services. J Intellect Dev Disabil. 2009; 34:197–206.

60. Seo HG, Yi YG, Choi YA, Leigh JH, Yi Y, Kim K, et al. Oropharyngeal dysphagia in adults with dyskinetic cerebral palsy and cervical dystonia: a preliminary study. Arch Phys Med Rehabil. 2019; 100:495–500. e1.

61. Nieuwenhuijsen C, Donkervoort M, Nieuwstraten W, Stam HJ, Roebroeck ME; Transition Research Group South West Netherlands. Experienced problems of young adults with cerebral palsy: targets for rehabilitation care. Arch Phys Med Rehabil. 2009; 90:1891–7.

62. Andren E, Grimby G. Dependence and perceived difficulty in activities of daily living in adults with cerebral palsy and spina bifida. Disabil Rehabil. 2000; 22:299–307.

63. Jahnsen R, Villien L, Egeland T, Stanghelle JK, Holm I. Locomotion skills in adults with cerebral palsy. Clin Rehabil. 2004; 18:309–16.

64. Hanna SE, Rosenbaum PL, Bartlett DJ, Palisano RJ, Walter SD, Avery L, et al. Stability and decline in gross motor function among children and youth with cerebral palsy aged 2 to 21 years. Dev Med Child Neurol. 2009; 51:295–302.

65. Tan SS, van der Slot WM, Ketelaar M, Becher JG, Dallmeijer AJ, Smits DW, et al. Factors contributing to the longitudinal development of social participation in individuals with cerebral palsy. Res Dev Disabil. 2016; 57:125–35.

66. Tan SS, Wiegerink DJ, Vos RC, Smits DW, Voorman JM, Twisk JW, et al. Developmental trajectories of social participation in individuals with cerebral palsy: a multicentre longitudinal study. Dev Med Child Neurol. 2014; 56:370–7.

67. Verhoef JA, Bramsen I, Miedema HS, Stam HJ, Roebroeck ME; Transition and Lifespan Research Group South West Netherlands. Development of work participation in young adults with cerebral palsy: a longitudinal study. J Rehabil Med. 2014; 46:648–55.

68. Schiariti V, Tatla S, Sauve K, O’Donnell M. Toolbox of multiple-item measures aligning with the ICF Core Sets for children and youth with cerebral palsy. Eur J Paediatr Neurol. 2017; 21:252–63.

69. van der Slot WM, Nieuwenhuijsen C, van den Berg-Emons RJ, Wensink-Boonstra AE, Stam HJ, Roebroeck ME, et al. Participation and health-related quality of life in adults with spastic bilateral cerebral palsy and the role of self-efficacy. J Rehabil Med. 2010; 42:528–35.

70. Usuba K, Oddson B, Gauthier A, Young NL. Changes in gross motor function and health-related quality of life in adults with cerebral palsy: an 8-year follow-up study. Arch Phys Med Rehabil. 2014; 95:2071–2077. e1.

71. Tan SS, van Meeteren J, Ketelaar M, Schuengel C, Reinders-Messelink HA, Raat H, et al. Long-term trajectories of health-related quality of life in individuals with cerebral palsy: a multicenter longitudinal study. Arch Phys Med Rehabil. 2014; 95:2029–39.