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Neuropediatrics 2016; 47(02): 097-106
DOI: 10.1055/s-0036-1571801
Original Article
Georg Thieme Verlag KG Stuttgart · New York

Health-Related Quality of Life in Children and Adolescents with Cerebral Palsy: A Secondary Analysis of the DISABKIDS Questionnaire in the Field-Study Cerebral Palsy Subgroup

Esther Mueller-Godeffroy
1   Department for Pediatric and Adolescent Medicine, University of Lübeck, Lübeck, Germany
,
Ute Thyen
1   Department for Pediatric and Adolescent Medicine, University of Lübeck, Lübeck, Germany
,
Monika Bullinger
2   Department of Medical Psychology, University Hamburg-Eppendorf, Hamburg, Germany
› Author Affiliations
Further Information

Publication History

07 October 2015

14 December 2015

Publication Date:
15 February 2016 (online)

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Abstract

Introduction Health-related quality of life (HRQOL) instruments are increasingly being used to evaluate interventions and therapy outcomes in children and adolescents with cerebral palsy (CP). A variety of psychometrically sound and validated generic and disease-specific instruments are available. A third type of instrument, the chronic-generic instrument, pertains to features of HRQOL that are shared by various chronic conditions.

The DISABKIDS family of questionnaires consists of a chronic-generic core measure (DCGM-37) and several condition-specific modules, among these, a CP module (CPM). The objective of this article was to describe the performance and, specifically, the validity of the DCGM-37 and CPM in children and adolescents with CP.

Methods Psychometric properties of the DCGM-37 and the CPM are presented. The discriminant validity was assessed compared with generic measures of HRQOL regarding different levels of impairment (physical independence; developmental delay).

Results A total of 86 patients with CP (mean age 13 years, range 7–19 years) and 78 main caretakers participated in this study. The DCGM-37 and CPM showed much better discriminative ability as compared with generic questionnaires.

Conclusions The DCGM-37 and CPM were able to differentiate between patients with different levels of impairment and can be recommended for treatment evaluation and group comparison in clinical studies of children and adolescents with CP.

Keywords

health-related quality of life - cerebral palsy - children - adolescents

Note

Access to the DISABKIDS family of instrument is provided through www.DISABKIDS.org.


 

  • References

  • 1 Davis E, Waters E, Mackinnon A , et al. Paediatric quality of life instruments: a review of the impact of the conceptual framework on outcomes. Dev Med Child Neurol 2006; 48 (4) 311-318
    CrossrefPubMedGoogle Scholar
  • 2 Tsoi WSE, Zhang LA, Wang WY, Tsang KL, Lo SK. Improving quality of life of children with cerebral palsy: a systematic review of clinical trials. Child Care Health Dev 2012; 38 (1) 21-31
    CrossrefPubMedGoogle Scholar
  • 3 Ravens-Sieberer U, Erhart M, Wille N, Wetzel R, Nickel J, Bullinger M. Generic health-related quality-of-life assessment in children and adolescents: methodological considerations. Pharmacoeconomics 2006; 24 (12) 1199-1220
    CrossrefPubMedGoogle Scholar
  • 4 Arnaud C, White-Koning M, Michelsen SI , et al. Parent-reported quality of life of children with cerebral palsy in Europe. Pediatrics 2008; 121 (1) 54-64
    CrossrefPubMedGoogle Scholar
  • 5 White-Koning M, Arnaud C, Dickinson HO , et al. Determinants of child-parent agreement in quality-of-life reports: a European study of children with cerebral palsy. Pediatrics 2007; 120 (4) e804-e814
    CrossrefPubMedGoogle Scholar
  • 6 Sattoe JN, van Staa A, Moll HA ; On Your Own Feet Research Group. The proxy problem anatomized: child-parent disagreement in health related quality of life reports of chronically ill adolescents. Health Qual Life Outcomes 2012; 10: 10
    CrossrefPubMedGoogle Scholar
  • 7 Waters E, Davis E, Ronen GM, Rosenbaum P, Livingston M, Saigal S. Quality of life instruments for children and adolescents with neurodisabilities: how to choose the appropriate instrument. Dev Med Child Neurol 2009; 51 (8) 660-669
    CrossrefPubMedGoogle Scholar
  • 8 Carlon S, Shields N, Yong K, Gilmore R, Sakzewski L, Boyd R. A systematic review of the psychometric properties of Quality of Life measures for school aged children with cerebral palsy. BMC Pediatr 2010; 10: 81
    CrossrefPubMedGoogle Scholar
  • 9 Wiebe S, Guyatt G, Weaver B, Matijevic S, Sidwell C. Comparative responsiveness of generic and specific quality-of-life instruments. J Clin Epidemiol 2003; 56 (1) 52-60
    CrossrefPubMedGoogle Scholar
  • 10 Stein REK, Jessop DJ. What diagnosis does not tell: the case for a noncategorical approach to chronic illness in childhood. Soc Sci Med 1989; 29 (6) 769-778
    CrossrefPubMedGoogle Scholar
  • 11 Bullinger M, Schmidt S, Petersen C ; DISABKIDS Group. Assessing quality of life of children with chronic health conditions and disabilities: a European approach. Int J Rehabil Res 2002; 25 (3) 197-206
    CrossrefPubMedGoogle Scholar
  • 12 Simeoni MC, Schmidt S, Muehlan H, Debensason D, Bullinger M ; DISABKIDS Group. Field testing of a European quality of life instrument for children and adolescents with chronic conditions: the 37-item DISABKIDS Chronic Generic Module. Qual Life Res 2007; 16 (5) 881-893
    CrossrefPubMedGoogle Scholar
  • 13 Baars RM, Atherton CI, Koopman HM, Bullinger M, Power M ; DISABKIDS group. The European DISABKIDS project: development of seven condition-specific modules to measure health related quality of life in children and adolescents. Health Qual Life Outcomes 2005; 3: 70
    CrossrefPubMedGoogle Scholar
  • 14 Schmidt S, Debensason D, Mühlan H , et al; European DISABKIDS Group. The DISABKIDS generic quality of life instrument showed cross-cultural validity. J Clin Epidemiol 2006; 59 (6) 587-598
    CrossrefPubMedGoogle Scholar
  • 15 Landgraf JM, Maunsell E, Speechley KN , et al. Canadian-French, German and UK versions of the Child Health Questionnaire: methodology and preliminary item scaling results. Qual Life Res 1998; 7 (5) 433-445
    CrossrefPubMedGoogle Scholar
  • 16 Ravens-Sieberer U, Bullinger M. Assessing health-related quality of life in chronically ill children with the German KINDL: first psychometric and content analytical results. Qual Life Res 1998; 7 (5) 399-407
    CrossrefPubMedGoogle Scholar
  • 17 Ravens-Sieberer U, Bullinger M. News from the KINDL-Questionnaire – A new version for adolescents. Qual Life Res 1998; 7: 653
    PubMedGoogle Scholar
  • 18 Mackie PC, Jessen EC, Jarvis SN. The lifestyle assessment questionnaire: an instrument to measure the impact of disability on the lives of children with cerebral palsy and their families. Child Care Health Dev 1998; 24 (6) 473-486
    CrossrefPubMedGoogle Scholar
  • 19 Landis JR, Koch GG. The measurement of observer agreement for categorical data. Biometrics 1977; 33 (1) 159-174
    CrossrefPubMedGoogle Scholar
  • 20 Cohen J. Statistical Power Analysis for the Behavioural Sciences. 2nd ed. Hillsdale, NJ: Lawrence Erlbaum Associates; 1988
    Google Scholar
  • 21 Silva N, Carona C, Crespo C, Bullinger M, Canavarro MC. The Portuguese DISABKIDS Asthma Module: a global index of asthma-specific quality of life for children and adolescents. J Asthma 2014; 51 (6) 645-651
    CrossrefPubMedGoogle Scholar
  • 22 Majnemer A, Shevell M, Law M, Poulin C, Rosenbaum P. Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy. Qual Life Res 2008; 17 (9) 1163-1171
    CrossrefPubMedGoogle Scholar
  • 23 Varni JW, Burwinkle TM, Sherman SA , et al. Health-related quality of life of children and adolescents with cerebral palsy: hearing the voices of the children. Dev Med Child Neurol 2005; 47 (9) 592-597
    CrossrefPubMedGoogle Scholar
  • 24 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 (6) 895-913
    CrossrefPubMedGoogle Scholar
  • 25 Livingston MH, Rosenbaum PL, Russell DJ, Palisano RJ. Quality of life among adolescents with cerebral palsy: what does the literature tell us?. Dev Med Child Neurol 2007; 49 (3) 225-231
    CrossrefPubMedGoogle Scholar
  • 26 Stephan-Carlier A, Facione J, Speyer E, Rumilly E, Paysant J. Quality of life and satisfaction after multilevel surgery in cerebral palsy: confronting the experience of children and their parents. Ann Phys Rehabil Med 2014; 57 (9–10) 640-652
    CrossrefPubMedGoogle Scholar
  • 27 Majnemer A, Shevell M, Rosenbaum P, Law M, Poulin C. Determinants of life quality in school-age children with cerebral palsy. J Pediatr 2007; 151 (5) 470-475 , 475.e1–475.e3
    CrossrefPubMedGoogle Scholar
  • 28 Badia M, Riquelme I, Orgaz B, Acevedo R, Longo E, Montoya P. Pain, motor function and health-related quality of life in children with cerebral palsy as reported by their physiotherapists. BMC Pediatr 2014; 14: 192
    CrossrefPubMedGoogle Scholar
  • 29 Dickinson HO, Parkinson KN, Ravens-Sieberer U , et al. Self-reported quality of life of 8-12-year-old children with cerebral palsy: a cross-sectional European study. Lancet 2007; 369 (9580) 2171-2178
    CrossrefPubMedGoogle Scholar
  • 30 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 (9969) 705-716
    CrossrefPubMedGoogle Scholar
  • 31 Schlarmann JG, Metzing-Blau S, Schnepp W. The use of health-related quality of life (HRQOL) in children and adolescents as an outcome criterion to evaluate family oriented support for young carers in Germany: an integrative review of the literature. BMC Public Health 2008; 8: 414
    CrossrefPubMedGoogle Scholar
  • 32 Morris C, Janssens A, Allard A , et al. Informing the NHS outcomes framework: evaluating meaningful health outcomes for children with neurodisability using multiple methods including systematic review, qualitative research, Delphi survey and consensus meeting. Southampton, United Kingdom. Health Serv Deliv Res 2014; 2 (15)
    PubMedGoogle Scholar
  • 33 Silva N, Bullinger M, Quitmann J, Ravens-Sieberer U, Rohenkohl A ; QoLISSY Group. HRQoL of European children and adolescents with short stature as assessed with generic (KIDSCREEN) and chronic-generic (DISABKIDS) instruments. Expert Rev Pharmacoecon Outcomes Res 2013; 13 (6) 817-827
    CrossrefPubMedGoogle Scholar
  • 34 Gustke M, Kosiol D, Bauer C, Baumann A, Stachow R, Farin E. Die Fragebögen Disabkids und Kidscreen - Vergleich der Änderungssensitivität bei der Erfassung gesundheitsbezogener Lebensqualität von Kindern und Jugendlichen [in German]. Z Med Psychol 2011; 20 (2) 51-59
    PubMedGoogle Scholar
  • 35 Stahl-Pehe A, Straßburger K, Castillo K , et al. Quality of life in intensively treated youths with early-onset type 1 diabetes: a population-based survey. Pediatr Diabetes 2014; 15 (6) 436-443
    CrossrefPubMedGoogle Scholar