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Neuropediatrics 2022; 53(02): 102-108
DOI: 10.1055/s-0041-1740377
Original Article

Validity and Reliability of the German Version of the CP QOL-Child and CP QOL-Teen Questionnaire

Manuel Maier
1   Department of Neuropediatrics, SPZ for Chronically Sick Children, Charité – Berlin University of Medicine, Berlin, Germany
,
Corinna Stoltenburg
1   Department of Neuropediatrics, SPZ for Chronically Sick Children, Charité – Berlin University of Medicine, Berlin, Germany
,
Akosua Sarpong-Bengelsdorf
3   Kinderarztpraxis, Berlin, Germany
,
Susanne Lebek
1   Department of Neuropediatrics, SPZ for Chronically Sick Children, Charité – Berlin University of Medicine, Berlin, Germany
2   Department of Pediatric Orthopedic Surgery and Neuro-Orthopedics, Center for Musculoskeletal Surgery, Charité – Berlin University of Medicine, Berlin, Germany
› Institutsangaben Funding None.
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Abstract

The aim of the study was to determine the psychometric properties of the German version of the Cerebral Palsy Quality of Life Questionnaire for Children and Adolescents (CP QOL-Child and -Teen). It is a condition-specific questionnaire with a self-report version, measuring well-being rather than ill-being, which differs from existing measurement methods. Fourteen children (9–12 years) and 64 caregivers (4–12 years) answered the child questionnaire. Twenty-one adolescents and 26 caregivers (all adolescents 13–18 years) replied to the teen version. Functioning was categorized by the Gross Motor Function Classification System. For CP QOL-child internal consistency (Cronbach's α) ranged from 0.58 to 0.88 and for CP QOL-Teen from 0.68 to 0.95. Test–retest reliability after 2 to 4 weeks ranged between 0.75 and 0.94 in children's version and 0.89 and 0.96 in teen's version. Correlation with well-established generic KIDSCREEN-10 questionnaire was moderate to strong. The German versions of CP QOL-Child and -Teen are appropriate tools for assessing the quality of life of children and adolescents with cerebral palsy in the German-speaking population.

Keywords

cerebral palsy - CPQOL - quality of life - German version - questionnaires


Publikationsverlauf

Eingereicht: 08. Februar 2021

Angenommen: 04. November 2021

Artikel online veröffentlicht:
08. Dezember 2021

© 2021. Thieme. All rights reserved.

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

 

  • References

  • 1 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
    Google Scholar
  • 2 Chambers HG, Sutherland DH. Movement analysis and measurement of the effects of surgery in cerebral palsy. Ment Retard Dev Disabil Res Rev 1997; 3 (02) 212-219
    CrossrefPubMedGoogle Scholar
  • 3 Bax M, Goldstein M, Rosenbaum P. et al; Executive Committee for the Definition of Cerebral Palsy. Proposed definition and classification of cerebral palsy, April 2005. Dev Med Child Neurol 2005; 47 (08) 571-576
    CrossrefPubMedGoogle Scholar
  • 4 Bjornson KF, McLaughlin JF. The measurement of health-related quality of life (HRQL) in children with cerebral palsy. Eur J Neurol 2001; 8 (Suppl. 05) 183-193
    CrossrefPubMedGoogle Scholar
  • 5 Viehweger E, Robitail S, Rohon MA. et al. Measuring quality of life in cerebral palsy children. Ann Readapt Med Phys 2008; 51 (02) 119-137
    CrossrefPubMedGoogle Scholar
  • 6 The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 1995; 41 (10) 1403-1409
    CrossrefPubMedGoogle Scholar
  • 7 Burns TM, Graham CD, Rose MR, Simmons Z. Quality of life and measures of quality of life in patients with neuromuscular disorders. Muscle Nerve 2012; 46 (01) 9-25
    CrossrefPubMedGoogle Scholar
  • 8 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 (04) 311-318
    CrossrefPubMedGoogle Scholar
  • 9 Eiser C, Mohay H, Morse R. The measurement of quality of life in young children. Child Care Health Dev 2000; 26 (05) 401-414
    CrossrefPubMedGoogle Scholar
  • 10 Davis E, Nicolas C, Waters E. et al. Parent-proxy and child self-reported health-related quality of life: using qualitative methods to explain the discordance. Qual Life Res 2007; 16 (05) 863-871
    CrossrefPubMedGoogle Scholar
  • 11 Gilson KM, Davis E, Reddihough D, Graham K, Waters E. Quality of life in children with cerebral palsy: implications for practice. J Child Neurol 2014; 29 (08) 1134-1140
    CrossrefPubMedGoogle Scholar
  • 12 Waters E, Maher E, Salmon L, Reddihough D, Boyd R. 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 2005; 31 (02) 127-135
    CrossrefPubMedGoogle Scholar
  • 13 Waters E, Davis E, Mackinnon A. et al. Psychometric properties of the quality of life questionnaire for children with CP. Dev Med Child Neurol 2007; 49 (01) 49-55
    CrossrefPubMedGoogle Scholar
  • 14 Davis E, Mackinnon A, Davern M. et al. Description and psychometric properties of the CP QOL-Teen: a quality of life questionnaire for adolescents with cerebral palsy. Res Dev Disabil 2013; 34 (01) 344-352
    CrossrefPubMedGoogle Scholar
  • 15 WHO. International classification of functioning, disability and health: ICF. 2001
    PubMedGoogle Scholar
  • 16 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 (08) 660-669
    CrossrefPubMedGoogle Scholar
  • 17 Power R, Akhter R, Muhit M. et al. A quality of life questionnaire for adolescents with cerebral palsy: psychometric properties of the Bengali CPQoL-Teens. Health Qual Life Outcomes 2019; 17 (01) 135
    CrossrefPubMedGoogle Scholar
  • 18 Wang HY, Cheng CC, Hung JW, Ju YH, Lin JH, Lo SK. Validating the Cerebral Palsy Quality of Life for Children (CP QOL-Child) questionnaire for use in Chinese populations. Neuropsychol Rehabil 2010; 20 (06) 883-898
    CrossrefPubMedGoogle Scholar
  • 19 Böling S, Tarja V, Helena M, Wivi F, Ilona AR, Leena H. Measuring quality of life of Finnish children with cerebral palsy. J Pediatr Rehabil Med 2013; 6 (03) 121-127
    CrossrefPubMedGoogle Scholar
  • 20 Soleimani F, Vameghi R, Kazemnejad A, Akbar Fahimi N, Nobakht Z, Rassafiani M. Psychometric properties of the Persian version of cerebral palsy quality of life questionnaire for children. Iran J Child Neurol 2015; 9 (01) 76-86
    PubMedGoogle Scholar
  • 21 Braccialli LM, Almeida VS, Sankako AN. et al. Translation and validation of the Brazilian version of the Cerebral Palsy Quality of Life Questionnaire for Children - child report. J Pediatr (Rio J) 2016; 92 (02) 143-148
    CrossrefPubMedGoogle Scholar
  • 22 Dmitruk E, Mirska A, Kułak W, Kalinowska AK, Okulczyk K, Wojtkowski J. Psychometric properties and validation of the Polish CP QOL-Child questionnaire: a pilot study. Scand J Caring Sci 2014; 28 (04) 878-884
    CrossrefPubMedGoogle Scholar
  • 23 Atasavun Uysal S, Düger T, Elbasan B, Karabulut E, Toylan İ. Reliability and validity of the cerebral palsy quality of life questionnaire in the Turkish population. Percept Mot Skills 2016; 122 (01) 150-164
    CrossrefPubMedGoogle Scholar
  • 24 Das S, Aggarwal A, Roy S, Kumar P. Quality of life in Indian Children with cerebral palsy using cerebral palsy-quality of life questionnaire. J Pediatr Neurosci 2017; 12 (03) 251-254
    CrossrefPubMedGoogle Scholar
  • 25 Ravens-Sieberer U, Erhart M, Rajmil L. et al; European KIDSCREEN Group. Reliability, construct and criterion validity of the KIDSCREEN-10 score: a short measure for children and adolescents' well-being and health-related quality of life. Qual Life Res 2010; 19 (10) 1487-1500
    CrossrefPubMedGoogle Scholar
  • 26 Palisano RJ, Cameron D, Rosenbaum PL, Walter SD, Russell D. Stability of the gross motor function classification system. Dev Med Child Neurol 2006; 48 (06) 424-428
    CrossrefPubMedGoogle Scholar
  • 27 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 (04) 214-223
    Google Scholar
  • 28 Surveillance of Cerebral Palsy in Europe. 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 (12) 816-824
    CrossrefPubMedGoogle Scholar
  • 29 Waters EDE, Boyd R, Reddihough D. et al. Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL-Child) Manual. In: Melbourne MUo, editor. 2013
    PubMedGoogle Scholar
  • 30 Souza AC, Alexandre NMC, Guirardello EB. Psychometric properties in instruments evaluation of reliability and validity. Epidemiol Serv Saude 2017; 26 (03) 649-659
    Google Scholar
  • 31 Böling S, Varho T, Haataja L. Longitudinal study showed that the quality of life of Finnish adolescents with cerebral palsy continued to be relatively good. Acta Paediatr 2018; 107 (03) 469-476
    CrossrefPubMedGoogle Scholar
  • 32 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
  • 33 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
  • 34 Parkinson KN, Gibson L, Dickinson HO, Colver AF. Pain in children with cerebral palsy: a cross-sectional multicentre European study. Acta Paediatr 2010; 99 (03) 446-451
    CrossrefPubMedGoogle Scholar
  • 35 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 (06) 434-440
    CrossrefPubMedGoogle Scholar