SEARCH

SEARCH BY CITATION

Abstract

  1. Top of page
  2. Abstract
  3. References

This review describes trends in quality of life (QOL) and health-related quality of life (HRQOL) among adolescents with cerebral palsy (CP). Twenty original articles were identified by a structured search of multiple databases and grouped by design. Categories included descriptive cross-sectional studies (n=8), measurement validation studies (n=9), and exploratory qualitative studies (n=3). Several trends were apparent. First, individuals with CP are reported to have decreased QOL and HRQOL compared with a normative population in some but not all areas of well-being. Second, functional status measures such as the Gross Motor Function Classification System are reliable indicators of variations in physical function, but do not correlate consistently with psychosocial well-being. Third, although adolescents with CP have different life issues than adults or children, limited research on factors associated with QOL and HRQOL has been described for this age range. We recommend that clinicians and researchers interested in assessing well-being among adolescents with CP include participants from across the spectrum of motor impairment, allow adolescents to self-report whenever possible, and assess adolescents independently, rather than including them with individuals from other age groups or clinical populations.

List of abbreviations
AUQUEI

Autoquestionnaire de qualité de vie enfant imagé (Pictured Child's Quality of Life Self Questionnaire)

CHQ

Care and Comfort Hypertonicity Questionnaire

CHQ

Child Health Questionnaire

CQ

Caregiver Questionnaire

EuroQol

European Quality of Life Questionnaire

HRQOL

Health-related quality of life

HUI-3

Health Utilities Index-Mark 3

LSS

Life Situation Survey

PedsQL

Pediatric Quality of Life Inventory

PODCI

Pediatric Outcomes Data Collection Instrument

QOL

Quality of life

SF-36

Medical Outcomes Study Short Form 36

References

  1. Top of page
  2. Abstract
  3. References
  • 1
    Rosenbaum P, Paneth N, Leviton A, Goldstein M, Bax M. (2007) Definition and classification of cerebral palsy.. Dev Med Child Neurol 49 (Suppl. 109): 814.
  • 2
    World Health Organization. (2001) International Classification of Functioning, Disability and Health. Geneva : World Health Organization.
  • 3
    Bowling A. (1991) Measuring Health. A Review of Quality of Life Measurement Scales. Milton Keynes : Open University Press.
  • 4
    Bergner M. (1989) Quality of life, health status, and clinical research. Med Care 27: S148S156.
  • 5
    Jessen EC, Colver AF, Mackie PC, Jarvis SN. (2003) Development and validation of a tool to measure the impact of childhood disabilities on the lives of children and their families. Child Care Health Dev 29: 2134.
  • 6
    Schipper H, Clinch JJ, Olweny CLM. (1996) Quality of life studies: definitions and conceptual issues. In: SpilkerB, editor. Quality of Life and Pharmacoeconomics in Clinical Trials. 2nd edn. Philadelphia : Lippincott-Raven. p 1123.
  • 7
    Spilker B. (1996) Introduction. In: SpilkerB, editor. Quality of Life and Pharmacoeconomics in Clinical Trials. 2nd edn. Philadelphia : Lippincott-Raven. p 110.
  • 8
    Albrecht GL, Devlieger PJ. (1999) The disability paradox: high quality of life against all odds. Soc Sci Med 48: 977988.
  • 9
    Guyatt GH, Feeny DH, Patrick DL. (1993) Measuring health-related quality of life. Ann Intern Med 118: 622629.
  • 10
    Magill-Evans J, Darrah J, Pain K, Adkins R, Kratochvil M. (2001) Are families with adolescents and young adults with cerebral palsy the same as other families. Dev Med Child Neurol 43: 466472.
  • 11
    Jahnsen R, Villien L, Stanghelle JK, Holm I. (2002) Coping potential and disability – sense of coherence in adults with cerebral palsy. Disabil Rehabil 24: 511518.
  • 12
    Shields N, Murdoch A, Loy Y, Dodd KJ, Taylor NF. (2006) A systematic review of the self-concept of children with cerebral palsy compared with children without cerebral palsy. Dev Med Child Neurol 48: 151157.
  • 13
    Smith KW, Avis NE, Assmann SF. (1999) Distinguishing between quality of life and health status in quality of life research: a meta-analysis. Qual Life Res 8: 447459.
  • 14
    Davis E, Waters E, Mackinnon A, Reddihough D, Graham HK, Mehmet-Radji O, Boyd R. (2006) Paediatric quality of life instruments: a review of the impact of conceptual frameworks on outcomes. Dev Med Child Neurol 48: 311318.
  • 15
    Bjornson KF, McLaughlin JF. (2001) The measurement of health-related quality of life (HRQOL) in children with cerebral palsy.. Eur J Neurol 8 (Suppl. 5): 183193.
  • 16
    Waters E, Maher E, Salmon L, Reddihough D, Boyd R. (2005) Development of a condition-specific measure of quality of life for children with cerebral palsy: empirical thematic data reported by parents and children. Child Care Health Dev 31: 127135.
  • 17
    Sandstrom K, Alinder J, Oberg B. (2004) Descriptions of functioning and health and relations to a gross motor classification in adults with cerebral palsy. Disabil Rehabil 26: 10231031.
  • 18
    Bottos M, Feliciangeli A, Sciuto L, Gernicke C, Vianello A. (2001) Functional status of adults with cerebral palsy and implications for treatment of children. Dev Med Child Neurol 43: 516528.
  • 19
    Thomas A, Bax M, Coombes K, Goldson E, Smyth D, Whitmore K. (1985) The health and social needs of physically handicapped young adults: are they being met by the statutory services. Dev Med Child Neurol 27 (Suppl. 50): 120.
  • 20
    Stevenson CJ, Pharoah POD, Stevenson R. (1997) Cerebral palsy – the transition from young to adulthood. Dev Med Child Neurol 39: 336342.
  • 21
    Engel JM, Jensen MP, Hoffman A, Kartin D. (2003) Pain in persons with cerebral palsy: extension and cross validation. Arch Phys Med Rehabil 84: 11251128.
  • 22
    Houlihan CM, O'Donnell M, Conaway M, Stevenson RD. (2004) Bodily pain and health-related quality of life in children with cerebral palsy. Dev Med Child Neurol 46: 305310.
  • 23
    Engel JM, Petrina TJ, Dudgeon BJ, McKearnan KA. (2005) Cerebral palsy and chronic pain: a descriptive study of children and adolescents. Phys Occup Ther Pediatr 25: 7384.
  • 24
    Jahnsen R, Villien L, Aaamodt G, Stanghelle JK, Holm I. (2003) Fatigue in adults with cerebral palsy compared with the general population. Dev Med Child Neurol 45: 296303.
  • 25
    Fung E, Samson-Fang L, Stallings VA, Conaway M, Liptak GS, Henderson RC, Worley G, O'Donnell M, Calvert R, Rosenbaum P, et al. (2002) Feeding dysfunction is associated with poor growth and health status in children with cerebral palsy. J Am Diet Assoc 102: 361373.
  • 26
    Samson-Fang L, Fung E, Stallings VA, Conaway M, Worley G, Rosenbaum P, Calvert R, O'Donnell M, Henderson RC, Chumlea WC, et al. (2002) Relationship of nutritional status to health and societal participation in children cerebral palsy. J Pediatr 141: 637643.
  • 27
    Hammal D, Jarvis SN, Colver AF. (2004) Participation of children with cerebral palsy is influenced by where they live. Dev Med Child Neurol 46: 292298.
  • 28
    Murphy KP, Molnar GE, Lankasky K. (1995) Medical and functional status of adults with cerebral palsy. Dev Med Child Neurol 37: 10751084.
  • 29
    Abel MF, Damiano DL, Blanco JS, Conaway M, Miller F, Dabney K, Sutherland D, Chambers H, Dias L, Sarwark J, et al. (2003) Relationship among musculoskeletal impairments and functional health status in ambulatory cerebral palsy. J Pediatr Orthop 23: 535541.
  • 30
    Lepage C, Noreau L, Bernard PM, Fougeyrollas P. (1998) Profile of handicap situations in children with cerebral palsy. Scand J Rehabil Med 30: 263272.
  • 31
    Andren E, Grimby G. (2000) Dependence and perceived difficulty in activities of daily living in adults with cerebral palsy and spina bifida. Disabil Rehabil 22: 299307.
  • 32
    Petersen C, Schmidt S, Power M, Bullinger M. (2005) Development and pilot-testing of a health-related quality of life chronic generic module for children and adolescents with chronic health conditions: a European perspective. Qual Life Res 14: 10651077.
  • 33
    Baars RM, Atherton CI, Koopman HM, Bullinger M, Power M. (2005) The European DISABKIDS project: development of seven different condition-specific modules to measure health-related quality of life in children and adolescents. Health Qual Life Outcomes 3: 70.
  • 34
    Vitale MG, Levy DE, Moskowitz AJ, Gelijns AC, Spellman M, Verdisco L, Roye DP. (2001) Capturing quality of life in pediatric orthopaedics: two recent measures compared. J Pediatr Orthop 21: 629635.
  • 35
    Vitale MG, Levy DE, Johnson MG, Geljins AC, Moskowitz AJ, Roye BP, Verdisco L, Roye DP Jr. (2001) Assessment of quality of life in adolescent patients with orthopaedic problems: are adult measures appropriate. J Pediatr Orthop 21: 622628.
  • 36
    Pirpiris M, Gates PE, McCarthy JJ, D'Astous JD, Tylkowski C, Sanders JO, Dorey FJ, Ostendorff S, Robles G, Caron C, Otsuka NY. (2006) Function and well-being in ambulatory cerebral palsy. J Pediatr Orthop 26: 119124.
  • 37
    Hodgkinson I, D'Anjou MC, Dazord A, Berard C. (2002) Qualité de vie d'une population de 54 infirmes moteurs cérébraux marchants. Étude transversale. Ann Réadaptation Méd Phys 45: 154158. (In French).
  • 38
    Liptak GS, O'Donnell M, Conaway M, Chumlea WC, Workley G, Henderson RC, Fung E, Stallings VA, Samson-Fang L, Calvert R, et al. (2001) Health status of children with moderate to severe cerebral palsy. Dev Med Child Neurol 43: 364370.
  • 39
    McCoy RN, Blasco PA, Russman BS, O'Malley JP. (2006) Validation of a care and comfort hypertonicity questionnaire. Dev Med Child Neurol 48: 181187.
  • 40
    King GA, Cathers T, Polgar JM, MacKinnon E, Havens L. (2000) Success in life for older adolescents with cerebral palsy. Qual Health Res 10: 734749.
  • 41
    Varni JW, Burwinkle TM, Sherman SA, Hanna K, Berrin SJ, Malcarne VL, Chambers HG. (2005) Health-related quality of life of children and adolescents with cerebral palsy: hearing the voices of children. Dev Med Child Neurol 47: 592597.
  • 42
    Landgraf JM, Abetz L, Ware JA. (1996) The CHQ User's Manual. 1st edn. Boston : The Health Institute, New England Medical Centre.
  • 43
    Daltroy LH, Liang MH, Fossel AH, Goldberg MJ, the Pediatric Outcomes Instrument Development Group. (1998) The POSNA Pediatric Musculoskeletal Functional Health Questionnaire: report on reliability, validity and sensitivity to change. J Pediatr Orthop 18: 561571.
  • 44
    Feeny DH, Torrance GW, Furlong WJ. (1996) Health Utilities Index. In: SpilkerB, editor. Quality of Life and Pharmacoeconomics in Clinical Trials. 2nd edn. Philadelphia : Lippincott-Raven. p 239252.
  • 45
    Manificat S, Dazord A, Cochat P, Nicolas J. (1997) Evaluation of the quality of life in pediatrics: how to collect the point of view of children. Arch Pediatr 4: 12381246.
  • 46
    Varni JW, Burwinkle TM, Seid M, Skarr D. (2003) The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability and validity. Amb Paediatr 3: 329341.
  • 47
    Chubon RA. (1995) Manual for the Life Situation Survey. Columbia : School of Medicine.
  • 48
    McHorney CA, Ware JEJr, Rogers W, Raczek AE, Lu JF. (1992) The validity and relative precision of MOS short- and long-form health status scales and Dartmouth COOP charts. Results from the Medical Outcomes Study.. Med Care 30:MS253MS265.
  • 49
    EuroQol Group. (1990) EuroQol: a new facility for the measurement of health-related quality of life. Health Policy 16: 199208.
  • 50
    Schneider JW, Gurucharri LM, Gutierrez AL, Gaebler-Spira DJ. (2001) Health-related quality of life and functional outcome measures for children with cerebral palsy. Dev Med Child Neurol 43: 601608.
  • 51
    Kennes J, Rosenbaum P, Hanna SE, Russell D, Raina P, Bartlett D, Galuppi B. (2002) Heath status of school-aged children with cerebral palsy: information from a population-based sample. Dev Med Child Neurol 44: 240247.
  • 52
    Wake M, Salmon L, Reddihough D. (2003) Health status of Australian children with mild to severe cerebral palsy: cross-sectional survey using the Child Health Questionnaire. Dev Med Child Neurol 45: 194199.
  • 53
    Waters E, Salmon L, Wake M, Hesketh K, Wright M. (2000) The Child Health Questionnaire in Australia: reliability, validity and norms for a measure of child health and well-being. Aust NZ J Public Health 24: 207210.
  • 54
    Vargus-Adams J. (2005) Health-related quality of life in childhood cerebral palsy. Arch Phys Med Rehabil 86: 940945.
  • 55
    Vitale MG, Roye EA, Choe JC, Hyman JE, Lee FY, Roye DP Jr. (2005) Assessment of health status in patients with cerebral palsy: what is the role of quality-of-life measures. J Pediatr Orthop 6: 792797.
  • 56
    Tuzun EH, Eker L, Daskapan A. (2004) An assessment of the impact of cerebral palsy on children's quality of life. Fiz Rehabil 15: 38.
  • 57
    McCarthy ML, Silberstein CE, Atkins EA, Harryman SE, Sponseller PD, Hadley-Miller NA. (2002) Comparing reliability and validity of pediatric instruments for measuring health and well-being of children with spastic cerebral palsy. Dev Med Child Neurol 44: 468476.
  • 58
    Palisano R, Rosenbaum P, Walter S, Russell D, Wood E, Galuppi B. (1997) Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol 39: 214223.
  • 59
    Verrips GH, Vogels AG, Den Ouden AL, Paneth N, Verloove-Vanhorick SP. (2000) Measuring health-related quality of life in adolescents: agreement between raters and between methods of administration. Child Care Health Dev 26: 457469.
  • 60
    Eiser C, Morse R. (2001) Can parents rate their child's health-related quality of life? Results of a systematic review. Qual Life Res 10: 347357.
  • 61
    Yeh CH, Chang CW, Chang PC. (2005) Evaluating quality of life in children with cancer using children's self-reports and parent-proxy reports. Nurs Res 35: 354362.