Reliability and validity of the CP-QOL-PCQ for caregivers of children and adolescents with cerebral palsy in Argentina

Abstract

Abstract: 

The Cerebral Palsy Quality of Life (CP-QOL) assesses health-related quality of life (HRQL) in children and adolescents with cerebral palsy (CP). It provides multidimensional information and there are versions for self-administration or for proxy-reports (Primary Caregiver Questionnaire, PCQ). The CP-QOL-PCQ was developed in Australia and was cross-culturally adapted for Argentine population. The objective of this research was to evaluate the reliability and validity of the CP-QOL-PCQ in the population of caregivers of children and adolescents in Argentina.

Cross-sectional study with mothers, fathers or other main caregivers of children and adolescents diagnosed with CP, residents in Argentina. The protocol followed international recommendations and was approved by the CIEIS-HNC-UNC. The questionnaire was applied by interviews in 2019 and by a digital self-administered questionnaire in 2020. Together with the CP-QOL-PCQ questionnaire, the KIDSCREEN was implemented as a generic HRQL measurement, and the Gross Motor Function Classification System (GMFCS) to assess the level of functionality. Descriptive items and domains were computed to fit the definitive scales’ structures and internal consistency (α: Cronbach's alpha coefficient), convergent validity (cc: correlation coefficient between CP-QOL-PCQ and KIDSCREEN), and validity based on standardized mean differences (Cohen's d) between hypothetically different groups (age, sex and GMFCS).

Hundred caregivers participated, mostly mothers (84%), representing boys and girls from 4 to 24 years old (mean: 13.27; standard deviation: 4.91 years). Descriptive statistics led to the elimination of one item, while the rest showed good results for skewness and kurtosis. Only one scale showed a ceiling effect and all of them had good internal consistency (α: 0.78-0.94). The convergence with scales measuring similar concepts was adequate for ‘emotional well-being domain (cc: 0.46), ‘family relationships’ (cc: 0.49) and ‘school environment (cc0.60) domains. Standardized mean differences showed that the higher age, the lower ‘relationships in the family’ CP-QOL-PCQ’s scores; and the greater severity of the functional compromise, the lower "pain and the impact of disability" scores.

This study provides evidence of adequate reliability and validity of the Argentine version of the CP-QOL-PCQ to produce multidimensional health indicators in children and adolescents with CP.