Comparing Caregivers' Perspectives on the Health-related Quality of Life of Children With Cerebral Palsy

Wang, A., Bone, J. N., Juricic, M., Miller, S. D., Wu, J., Mulpuri, K., & Schaeffer, E. K. (2026). Comparing Caregivers’ Perspectives on the Health-related Quality of Life of Children With Cerebral Palsy. Journal of Pediatric Orthopaedics. https://doi.org/10.1097/BPO.0000000000003384

Abstract

Background:

The Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) questionnaire is a validated outcome measure used to assess health-related quality of life (HRQL) in children with severe cerebral palsy (CP). Although it has become a widely used tool to evaluate the effectiveness of surgical interventions, caregiver demographics are not necessarily reported or taken into account when administering the questionnaire longitudinally. The objective of this study was to investigate differences in caregiver perspectives on HRQL in children with severe CP as measured by CPCHILD.

Methods:

Families and/or care teams of children with CP or CP-like conditions classified at GMFCS levels IV and V were approached at a tertiary referral centre. Two primary caregivers of each patient were required to be eligible for enrollment. Caregivers were defined as individuals directly involved in the child’s care, assisting with activities of daily living (ADL) or routinely spending time with the child. Two primary caregivers of each patient were asked to complete the Parent Version of the CPCHILD questionnaire. Differences in caregiver scores were analyzed using the Wilcoxon signed-rank test. Paired t tests were used to analyze the differences in caregiver pair scores.

Results:

Fifty pairs of caregivers were included, with 100 questionnaires completed. Children of the participating caregivers were an average age of 9.5 years [95% CI (8.6,10.4)]. Caregivers were an average age of 43.4 years [95% CI (41.1,45.7)] with an average age difference of 7.4 years [95% CI (5.8, 9.0)] between pairs. The average total CPCHILD score was 50.3 (95% CI [47.5,53.1]) with an average score difference of 7.5 [95% CI (5.7, 9.3)] between caregiver pairs. No differences in CPCHILD score distribution were seen with caregiver sex, days responsible for caregiving, education level, or relationship to child.

Conclusions:

Although the mean difference did not reach the commonly used threshold for clinical significance (10 points), it exceeded the validated equivalence margin of 4 points, suggesting caregiver scores may not be interchangeable. This variability may affect longitudinal assessment and interpretation of treatment outcomes when different caregivers complete the measure.