Comparative study reveals quality-of-life rating differences between primary caregiver pairs of children with severe cerebral palsy, indicating scores are not interchangeable.
Key Points
To investigate differences in caregiver perspectives on health-related quality of life in children with severe cerebral palsy using the CPCHILD questionnaire.
Enrolled 50 caregiver pairs (100 completed questionnaires) of children with cerebral palsy or CP-like conditions classified at GMFCS levels IV and V at a tertiary referral centre.
Administered the Parent Version of the CPCHILD questionnaire to two primary caregivers per patient who were routinely involved in care or activities of daily living.
Evaluated differences between paired caregiver scores using paired t tests and the Wilcoxon signed-rank test.
Children averaged 9.5 years of age [95% CI (8.6, 10.4)], and caregivers averaged 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 between caregiver pairs of 7.5 points [95% CI (5.7, 9.3)], exceeding the validated 4-point equivalence margin.
No differences in CPCHILD score distributions were observed based on caregiver sex, caregiving days, education level, or relationship to the child.