Disparity of child/parent-reported quality of life in cerebral palsy persists into adolescence

Mariane Sentenac 1Marion Rapp 2Virginie Ehlinger 1Allan Colver 3 Ute Thyen 2 Catherine Arnaud 1

PMID: 32710687

DOI: 10.1111/dmcn.14638

Abstract Aim: To examine the evolution of child-parent discrepancy in reporting quality of life (QoL) between childhood and adolescence in children with cerebral palsy (CP) and to investigate potential factors associated with such a discrepancy.

Method: We used data from the SPARCLE (Study of PARticipation of Children with CP Living in Europe) study, a population-based cohort study of children with CP, aged 8 to 12 years at baseline (in 2004-2005), in nine European centres, who were followed up at the age of 13 to 17 years. The KIDSCREEN-52 Quality of Life measure was used at baseline and follow-up; 354 child-parent dyads out of 500 eligible dyads were followed up (201 males, 153 females). We used intraclass correlation coefficients (ICCs) to examine agreement between parent proxy-reports and self-reported QoL. We used linear regression to examine factors associated with the child-parent discrepancy in QoL reporting.


Results: Agreement was low to moderate (ICC=0.16-0.48) in childhood and in adolescence across all QoL domains. In four domains (moods and emotions, self-perception, relationship with parents and home life, and social support and peers), the extent of the discrepancy increased significantly between childhood and adolescence. Parenting stress, child pain, and child behaviour problems influenced parent proxy-reports during both childhood and adolescence.

Interpretation: The points of view of the child and their parents should be treated as complementary to obtain better knowledge regarding the QoL of children and adolescents with CP.

References

  1. Wallander JL, Koot HM. Quality of life in children: a critical examination of concepts, approaches, issues, and future directions. Clin Psychol Rev 2016; 45: 131-43.

  2. Fayed N, de Camargo OK, Kerr E, et al. Generic patient-reported outcomes in child health research: a review of conceptual content using World Health Organization definitions. Dev Med Child Neurol 2012; 54: 1085-95.

  3. Pickard AS, Knight SJ. Proxy evaluation of the health-related quality of life: a conceptual framework for understanding multiple proxy perspectives. Med Care 2005; 43: 493-9.

  4. Eiser C, Varni JW. Health-related quality of life and symptom reporting: similarities and differences between children and their parents. Eur J Pediatr 2013; 172: 1299-304.

  5. 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: 895-913.


1 view

​​

 

ABN 55 641 613 541 ACN 641 613 542

© 2020 Australian Disability by Beach Websites

Registered Charity logo of Australian Disability