Health issues in young adults with cerebral palsy: Towards a life-span perspective
doi: 10.2340/16501977-0103
Abstract:
Objective: To obtain better insight into the health issues of young adults with cerebral palsy.
Design: Cross-sectional.
Subjects: Two data sources were used: 54 adults with cerebral palsy (age range 25–36 years) and 48 physicians (members of the Netherlands Society of Physical and Rehabilitation Medicine).
Methods: Adults with cerebral palsy participated in a physical examination and a semi-structured interview assessing several health issues and utilization of healthcare. Rehabilitation physicians completed a questionnaire on impairments they recognized as being related to cerebral palsy.
Results: In the patient sample, pain (59%) and joint deformities (19–57%) were observed most frequently. Evidence of a decrease in the utilization of healthcare services at adult age emerged. Lower gross motor function and cognitive level appeared to be determinants of motor and speech impairments and of the utilization of 3 allied healthcare services. Rehabilitation physicians reported pain (88%), joint deformities (86%) and fatigue (76%) as being cerebral palsy-related health problems in adults.
Conclusion: Based on the high prevalence of pain and joint deformities and the decrease in the utilization of healthcare services, systematic follow-up in adults with cerebral palsy seems warranted. Cerebral palsy needs to be considered as a life-long condition, requiring a life-span perspective in order to better organize optimal care.
Authors:
Sander R. Hilberink, Marij E. Roebroeck, Wilbert Nieuwstraten, Loes Jalink, Johannes M.A. Verheijden and Henk J. Stam
Key words:
cerebral palsy, adulthood, secondary impairments, rehabilitation care.
References
- Bax M, Goldstein M, Rosenbaum P, Leviton A, Paneth N, Dan B, et al. Proposed definition and classification of cerebral palsy, April 2005. Dev Med Child Neurol 2005; 47: 571–576.
- Pelegrino L, Dormans JP. Definitions, etiology, and epidemiology of cerebral palsy. In: Dormans KP, Pellegrino L, editors. Caring for children with cerebral palsy: a team approach. Baltimore: Paul H. Brooks Publishing Co. ; 1998, p. 3–30.
- Nieuwenhuijsen C, Donkervoort M, Wiegerink DJHG, Roebroeck ME, Stam HJ. Unmet needs and health care utilization in young adults with cerebral palsy. Dev Med Child Neurol 2005; 47 Suppl 103: 42.
- Roebroeck ME, Nieuwenhuijsen C, Donkervoort M, van Meeteren J, Stam H. Lost in transition? Unmet needs and implementation of special rehabilitation teams for young adults with disabilities. Dev Med Child Neurol 2005; 47 Suppl 103: 50.
- Beckung E, Hagberg G. Neuroimpairments, activity limitations, and participation restrictions in children with cerebral palsy. Dev Med Child Neurol 2002; 44: 309–316.
- SCPE. Surveillance of cerebral palsy in Europe: a collaboration of cerebral palsy surveys and registers. Surveillance of Cerebral Palsy in Europe (SCPE). Dev Med Child Neurol 2000; 42: 816–824.
- Meyhuizen-De Regt MJ, de Moor JMH, Mulders AHM, editors. Kinderrevalidatie [Paediatric rehabilitation]. Assen, The Netherlands: Van Gorcum; 2003 (in Dutch).
- Hutton JL, Cooke T, Pharoah PO. Life expectancy in children with cerebral palsy. BMJ 1994; 309: 431–435.
- Kuban KC, Leviton A. Cerebral palsy. N Engl J Med 1994; 330: 188–195. Link to article
- Turk MA, Weber RJ. Adults with congenital and childhood onset disability disorders. In: DeLisa JA, Gans BM, editors. Rehabilitation medicine: principles and practice (3rd edn). Philadelphia, USA: Lippincott – Raven Publishers; 1998, p. 953–962.
- Turk MA, Geremski CA, Rosenbaum PF, Weber RJ. The health status of women with cerebral palsy. Arch Phys Med Rehabil 1997; 78 Suppl 5: S10–17.
.
- Engel JM, Jensen MP, Hoffman AJ, Kartin D. Pain in persons with cerebral palsy: extension and cross validation. Arch Phys Med Rehabil 2003; 84: 1125–1128.
- 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: 516–528.
- Jahnsen R, Villien L, Stanghelle JK, Holm I. Fatigue in adults with cerebral palsy in Norway compared with the general population. Dev Med Child Neurol 2003; 45: 296–303.
- Jahnsen R, Villien L, Aamodt G, Stanghelle JK, Holm I. Musculo
skeletal pain in adults with cerebral palsy compared with the general population. J Rehabil Med 2002; 36: 78–84.
- Jahnsen R, Villien L, Egeland T, Stanghelle JK, Holm I. Locomotion skills in adults with cerebral palsy. Clin Rehabil 2004; 18: 309–316.
- 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.
- Murphy KP, Molnar GE, Lankasky K. Medical and functional status of adults with cerebral palsy. Dev Med Child Neurol 1995; 37: 1075–1084.
- Strauss D, Ojdana K, Shavelle R, Rosenbloom L. Decline in function and life expectancy of older persons with cerebral palsy. NeuroRehabilitation 2004; 19: 69–78.
- Andren E, Grimby G. Dependence in daily activities and life satisfaction in adult subjects with cerebral palsy or spina bifida: a follow-up study. Disabil Rehabil 2004; 26: 528–536.
- Thomas AP, Bax MCO, Smyth DPL. The health care of physically handicapped young adults. Z Kinderchir 1987; 42 Suppl 1: 57–59.
- Stevenson CJ, Pharoah PO, Stevenson R. Cerebral palsy – the transition from youth to adulthood. Dev Med Child Neurol 1997; 39: 336–342.
- Donkervoort M, Wiegerink DJHG, Roebroeck ME, Stam HJ. Transition into adulthood and level of participation in adolescents and young adults with cerebral palsy. Dev Med Child Neurol 2005; 47 Suppl 103: 18–19.
- Bax MC, Smyth DP, Thomas AP. Health care of physically handicapped young adults. BMJ (Clin Res Ed) 1988; 296: 1153–1155. Link to article
- Cathels BA, Reddihough DS. The health care of young adults with cerebral palsy. Med J Austr 1993; 159: 444–446.
- Beecham J, O’Neill T, Goodman R. Supporting young adults with hemiplegia: services and costs. Health Soc Care Community 2001; 9: 51–59.
- 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 2003; 11: 80–89.
- Van der Dussen L, Nieuwstraten W, Roebroeck M, Stam HJ. Functional level of young adults with cerebral palsy. Clin Rehabil 2001; 15: 84–91.
- Palisano R, Rosenbaum P, Walter S, Russell D, Wood E, Galuppi B. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol 1997; 39: 214–223.
- Donkervoort M, Roebroeck ME, Wiegerink DJHG, van der Heijden H, Stam HJ, Transition Research Group. Determinants of participation in social life of adolescents and young adults with cerebral palsy. Disabil Rehabil; 2007; 29:453-463.
.
- Vanstiphout CGH, Donkervoort M, Pangalila R, Roebroeck ME, Stam HJ. Cognitive abilities and social participation in adolescents and young adults with cerebral palsy without severe learning disabilities. Dev Med Child Neurol 2005; 47 Suppl 103: 59.
- van der Slot W, Roebroeck ME, Landkroon AP, Terburg M, Berg-Emons HJG, Stam HJ. Everyday physical activity and community participation of adults with hemiplegic cerebral palsy. Disabil Rehabil; 2007; 29:179-189.
.
- Van der Kloot WA, Vertomen S, editors. De MPQ-DLV. Een standaard Nederlandstalige versie van de McGill Pain Questionnaire [The MPQ-DLV. A standardized Dutch language version of the McGill pain questionnaire]. Lisse: Swets & Zeitlinger; 1989.
- Melzack R. The short-form McGill Pain Questionnaire. Pain. 1987; 30: 191–197.
- Boldingh EJ, Jacobs-van der Bruggen MA, Lankhorst GJ, Bouter LM. Assessing pain in patients with severe cerebral palsy: development, reliability, and validity of a pain assessment instrument for cerebral palsy. Arch Phys Med Rehabil 2004; 85: 758–766.
- Ostensjø S, Carlberg EB, Vøllestad NK. Motor impairments in young children with cerebral palsy: relationship to gross motor function and everyday activities. Dev Med Child Neurol 2004; 46: 580–589.
- WHO. International classification of functioning, disability and health (ICF). Geneva: World Health Organization; 2001.
- Majd ME, Muldowny DS, Holt RT. Natural history of scoliosis in the institutionalized adult cerebral palsy population. Spine 1997; 22: 1461–1466. Link to article
- Saito N, Ebara S, Ohotsuka K, Kumeta H, Takaoka K. Natural history of scoliosis in spastic cerebral palsy. Lancet 1998; 351: 1687–1692. Link to article
- Jacobi CE, Triemstra M, Rupp I, Dinant HJ, van den Bos GAM. Health care utilization among rheumatoid arthritis patients referred to a rheumatology center: Unequal needs, unequal care? Arthr Care Res 2001; 45: 324–330.