Abstract
CONTEXT: Patient-reported experience and outcome measures are crucial tools for assessing care quality. However, a critical gap exists in validated family-reported tools for the pediatric advanced cancer context. OBJECTIVES: We aimed to develop, refine, and validate a novel parent-reported instrument to evaluate quality of care in children with advanced cancer. METHODS: We designed the "Pediatric Cancer Care Experience" (PACE) questionnaire as a parent-reported instrument to characterize cancer care quality, service delivery, and experience. The first draft of the questionnaire was revised based on face and content validity testing by healthcare professionals and cognitive interviews with parents of children with cancer. We then piloted the questionnaire in a multicenter, cross-sectional study of parents/guardians of children with advanced cancer. Using the responses from this cohort, we tested psychometric properties of the questionnaire, including exploratory factor analysis (EFA), internal consistency, and construct validity. RESULTS: PACE demonstrated robust face and content validity. The pilot cohort consisted of 158 parents/guardians of children with advanced cancer who predominantly self-identified as female (70%) and non-Hispanic White (58%). exploratory factor analysis (EFA) identified a three-factor model, including (1) therapeutic alliance, (2) collaborative care, and (3) prognostic communication and shared decision-making. We achieved sufficient internal consistency for all factors (Cronbach's α range: 0.8-0.9). Construct validity testing suggested accurate measurement of the intended theoretical concepts. CONCLUSION: PACE is a rigorously developed parent-reported instrument to assess care quality and experience in children with advanced cancer. Systematic deployment of PACE will enable future care delivery research and quality improvement.