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Long-Term Deterioration of Perceived Health and Functioning in Adults With Cerebral Palsy

Published:April 18, 2017DOI:https://doi.org/10.1016/j.apmr.2017.03.013

      Abstract

      Objective

      To describe longitudinal change in perceived health, presence of health issues, and functional level in adults with cerebral palsy (CP).

      Design

      Prospective cohort study.

      Setting

      Participants' daily environment.

      Participants

      Adults (N=49) with CP (age range, 35–45y; 27 [55%] men; 36 [75%] spastic) formerly known in pediatric rehabilitation care participated.

      Interventions

      Not applicable.

      Main Outcome Measures

      Postal questionnaires were completed by the adults or their proxies (n=9). Health outcomes included perceived health (adapted from the 36-Item Short Form Health Survey) and presence of health issues such as pain, severe fatigue (dichotomized), and functional level (Barthel Index; walking performance).

      Results

      Over a 10-year period, the percentage of adults with CP worrying about their health increased (29%–54%; P=.008) and those indicating that health problems limit their activities increased (19%–45%; P=.002). In the same period, most adults continued to report good general health (93%–86%; P=.148). Presence of some health issues increased over time, such as pain; severe fatigue was a common health issue at follow-up (32%). Over a 14-year period, mobility and self-care deteriorated (Barthel Index, 17.1±4.8 to 16.3±5.6; P=.007). Walking performance, specifically indoors, declined (83%–71%; P=.010).

      Conclusions

      Adults with CP experienced deterioration in health outcomes in the long term. Most notably, perceived health and functional level decreased. Pain and severe fatigue were the most common health issues in adult CP. More research is required to explore the mechanisms at work in the process of aging in persons with CP. Systematic follow-up of adults with CP appears necessary to timely detect and intervene in health problems and functional decline.

      Keywords

      List of abbreviations:

      CI (confidence interval), CP (cerebral palsy), GMFCS (Gross Motor Function Classification System), MPQ-QLI (McGill Pain Questionnaire-Quality of Life Index)
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      References

        • Rosenbaum P.
        • Paneth N.
        • Leviton A.
        • et al.
        A report: the definition and classification of cerebral palsy April 2006.
        Dev Med Child Neurol Suppl. 2007; 109: 8-14
        • Odding E.
        • Roebroeck M.E.
        • Stam H.J.
        The epidemiology of cerebral palsy: incidence, impairments and risk factors.
        Disabil Rehabil. 2006; 28: 183-191
        • Paneth N.
        • Hong T.
        • Korzeniewski S.
        The descriptive epidemiology of cerebral palsy.
        Clin Perinatol. 2006; 33: 251-267
        • Access Economics
        The economic impact of cerebral palsy in Australia in 2007.
        Access Economics, Canberra2008
        • Hilberink S.R.
        • Roebroeck M.E.
        • Nieuwstraten W.
        • Jalink L.
        • Verheijden J.M.
        • Stam H.J.
        Health issues in young adults with cerebral palsy: towards a life-span perspective.
        J Rehabil Med. 2007; 39: 605-611
        • Roebroeck M.E.
        • Jahnsen R.
        • Carona C.
        • Kent R.M.
        • Chamberlain M.A.
        Adult outcomes and lifespan issues for people with childhood-onset physical disability.
        Dev Med Child Neurol. 2009; 51: 670-678
        • Frisch D.
        • Msall M.E.
        Health, functioning, and participation of adolescents and adults with cerebral palsy: a review of outcomes research.
        Dev Disabil Res Rev. 2013; 18: 84-94
        • Engel J.M.
        • Jensen M.P.
        • Hoffman A.J.
        • Kartin D.
        Pain in persons with cerebral palsy: extension and cross validation.
        Arch Phys Med Rehabil. 2003; 84: 1125-1128
        • Jahnsen R.
        • Villien L.
        • Aamodt G.
        • Stanghelle J.K.
        • Holm I.
        Musculoskeletal pain in adults with cerebral palsy compared with the general population.
        J Rehabil Med. 2004; 36: 78-84
        • Jahnsen R.
        • Villien L.
        • Stanghelle J.K.
        • Holm I.
        Fatigue in adults with cerebral palsy in Norway compared with the general population.
        Dev Med Child Neurol. 2003; 45: 296-303
        • van der Slot W.M.
        • Nieuwenhuijsen C.
        • Van Den Berg-Emons R.J.
        • et al.
        Chronic pain, fatigue, and depressive symptoms in adults with spastic bilateral cerebral palsy.
        Dev Med Child Neurol. 2012; 54: 836-842
        • 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.
        • Egeland T.
        • Stanghelle J.K.
        • Holm I.
        Locomotion skills in adults with cerebral palsy.
        Clin Rehabil. 2004; 18: 309-316
        • Opheim A.
        • Jahnsen R.
        • Olsson E.
        • Stanghelle J.K.
        Walking function, pain, and fatigue in adults with cerebral palsy: a 7-year follow-up study.
        Dev Med Child Neurol. 2009; 51: 381-388
        • Morgan P.
        • McGinley J.
        Gait function and decline in adults with cerebral palsy: a systematic review.
        Disabil Rehabil. 2014; 36: 1-9
        • 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
        • Cieza A.
        • Oberhauser C.
        • Bickenbach J.
        • Chatterji S.
        • Stucki G.
        Towards a minimal generic set of domains of functioning and health.
        BMC Public Health. 2014; 14: 218
        • van der Dussen L.
        • Nieuwstraten W.
        • Roebroeck M.
        • Stam H.J.
        Functional level of young adults with cerebral palsy.
        Clin Rehabil. 2001; 15: 84-91
        • Vos R.C.
        • Dallmeijer A.J.
        • Verhoef M.
        • et al.
        Developmental trajectories of receptive and expressive communication in children and young adults with cerebral palsy.
        Dev Med Child Neurol. 2014; 56: 951-959
        • Donkervoort M.
        • Wiegerink D.J.
        • van Meeteren J.
        • Stam H.J.
        • Roebroeck M.E.
        • Transition Research Group South West Netherlands
        Transition to adulthood: validation of the Rotterdam Transition Profile for young adults with cerebral palsy and normal intelligence.
        Dev Med Child Neurol. 2009; 51: 53-62
        • 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
        • Ware Jr., J.E.
        • Sherbourne C.D.
        The MOS 36-Item Short-Form Health Survey (SF-36). I. Conceptual framework and item selection.
        Med Care. 1992; 30: 473-483
        • van der Kloot W.A.
        • Oostendorp R.A.
        • van der Meij J.
        • van den Heuvel J.
        Ned Tijdschr Geneeskd. 1995; 139 ([Dutch]): 669-673
        • Collin C.
        • Wade D.T.
        • Davies S.
        • Horne V.
        The Barthel ADL Index: a reliability study.
        Int Disabil Stud. 1988; 10: 61-63
        • Post M.W.
        • van Asbeck F.W.
        • van Dijk A.J.
        • Schrijvers A.J.
        Ned Tijdschr Geneeskd. 1995; 139 ([Dutch]): 1376-1380
        • Nyein K.
        • McMichael L.
        • Turner-Stokes L.
        Can a Barthel score be derived from the FIM?.
        Clin Rehabil. 1999; 13: 56-63
        • Krupp L.B.
        • LaRocca N.G.
        • Muir-Nash J.
        • Steinberg A.D.
        The Fatigue Severity Scale: application to patients with multiple sclerosis and systemic lupus erythematosus.
        Arch Neurol. 1989; 46: 1121-1123
        • Merkies I.S.
        • Schmitz P.I.
        • Samijn J.P.
        • van der Meche F.G.
        • van Doorn P.A.
        • European Inflammatory Neuropathy Cause and Treatment (INCAT) Group
        Fatigue in immune-mediated polyneuropathies.
        Neurology. 1999; 53: 1648-1654
        • Botterweck A.
        • Frenken F.
        • Janssen S.
        • Rozendaal L.
        • de Vree M.
        • Otten F.
        [Plausibility new measurements general health and lifestyles] [Dutch].
        Centraal Bureau voor de Statistiek, Heerlen2001
        • Hachisuka K.
        • Ogata H.
        • Ohkuma H.
        • Tanaka S.
        • Dozono K.
        Test-retest and inter-method reliability of the self-rating Barthel Index.
        Clin Rehabil. 1997; 11: 28-35
        • Twisk J.W.
        Applied longitudinal data analysis for epidemiology: a practical guide.
        2nd ed. Cambridge Univ Pr, Cambridge2015
        • Klingbeil H.
        • Baer H.R.
        • Wilson P.E.
        Aging with a disability.
        Arch Phys Med Rehabil. 2004; 85 (quiz S4-5): S68-S73
        • Hopman W.M.
        • Berger C.
        • Joseph L.
        • et al.
        • CaMos Research Group
        Prospectively measured 10-year changes in health-related quality of life and comparison with cross-sectional estimates in a population-based cohort of adult women and men.
        Qual Life Res. 2014; 23: 2707-2721
        • Hirsh A.T.
        • Kratz A.L.
        • Engel J.M.
        • Jensen M.P.
        Survey results of pain treatments in adults with cerebral palsy.
        Am J Phys Med Rehabil. 2011; 90: 207-216
        • Rodby-Bousquet E.
        • Czuba T.
        • Hagglund G.
        • Westbom L.
        Postural asymmetries in young adults with cerebral palsy.
        Dev Med Child Neurol. 2013; 55: 1009-1015
        • Opheim A.
        • Jahnsen R.
        • Olsson E.
        • Stanghelle J.K.
        Physical and mental components of health-related quality of life and musculoskeletal pain sites over seven years in adults with spastic cerebral palsy.
        J Rehabil Med. 2011; 43: 382-387
        • Schwartz L.
        • Engel J.M.
        • Jensen M.P.
        Pain in persons with cerebral palsy.
        Arch Phys Med Rehabil. 1999; 80: 1243-1246
        • Usuba K.
        • Oddson B.
        • Gauthier A.
        • Young N.L.
        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
        • Albrecht G.L.
        • Devlieger P.J.
        The disability paradox: high quality of life against all odds.
        Soc Sci Med. 1999; 48: 977-988
        • Schwartz C.E.
        • Andresen E.M.
        • Nosek M.A.
        • Krahn G.L.
        • RRTC Expert Panel on Health Status Measurement
        Response shift theory: important implications for measuring quality of life in people with disability.
        Arch Phys Med Rehabil. 2007; 88: 529-536
        • Goldsmith S.
        • McIntyre S.
        • Smithers-Sheedy H.
        • et al.
        An international survey of cerebral palsy registers and surveillance systems.
        Dev Med Child Neurol. 2016; 58: 11-17
        • Alriksson-Schmidt A.I.
        • Arner M.
        • Westbom L.
        • et al.
        A combined surveillance program and quality register improves management of childhood disability.
        Disabil Rehabil. 2017; 39: 830-836
        • Colver A.
        • Rapp M.
        • Eisemann N.
        • et al.
        Self-reported quality of life of adolescents with cerebral palsy: a cross-sectional and longitudinal analysis.
        Lancet. 2015; 385: 705-716
        • Weissman-Fogel I.
        • Roth A.
        • Natan-Raav K.
        • Lotan M.
        Pain experience of adults with intellectual disabilities—caregiver reports.
        J Intellect Disabil Res. 2015; 59: 914-924
        • Lotan M.
        • Moe-Nilssen R.
        • Ljunggren A.E.
        • Strand L.I.
        Reliability of the Non-Communicating Adult Pain Checklist (NCAPC), assessed by different groups of health workers.
        Res Dev Disabil. 2009; 30: 735-745
        • Upton P.
        • Lawford J.
        • Eiser C.
        Parent-child agreement across child health-related quality of life instruments: a review of the literature.
        Qual Life Res. 2008; 17: 895
        • Hurvitz E.A.
        • Marcianak C.M.
        • Daunter A.K.
        • et al.
        Functional outcomes of childhood dorsal rhizotomy in adults and adolescents with cerebral palsy.
        J Neurosurg Pediatr. 2013; 11: 380-388