Involvement in care in pediatric cancer patients: implications for treatment compliance, mental health and health-related quality of life

Purpose: The present study developed a new measure of involvement in care of pediatric oncology patients termed the Child Involvement in Care Scale (CICS), and empirically examined the mental health consequences of involvement in care for children with cancer. Method: The CICS was administered to 236 children with cancer aged 8–12 who were recruited from three large hospitals in Israel. The children also completed questionnaires on their mental-health symptoms and emotional well-being. The children’s parents completed measures on their child’s compliance with treatment and health-related quality of life (HRQOL). Results: Exploratory and confirmatory factor analyses supported a 2-factor structure (knowledge and participation), representing different aspects of involvement in care. Compliance with treatment served as a mediator for the relationships between involvement in care and health-related outcomes. Involvement in care was positively associated with higher treatment compliance. In addition, treatment compliance was positively associated with HRQOL and positive emotions but negatively associated with psychiatric symptoms. Conclusion: Pediatric cancer patients’ involvement in the process of care is linked to better treatment compliance and mental health outcomes. Additional research is needed to examine the specific conditions and contexts in which involvement in care contributes to mental health and subjective well-being of children with cancer.