PACOPED QL: Development and evaluation of the quality-of-life scale for children with life-threatening illnesses.

Objectives: This study aims to validate the Palliative and Complex Chronic Pediatric Patients QoL Inventory (PACOPED QL), a new quality-of-life (QoL) assessment tool for pediatric palliative patients with complex chronic conditions. The goal is to create a comprehensive and inclusive instrument tailored to this unique population, addressing the gap in existing tools that do not meet these specific needs.

Methods: The validation process included a literature review and consultations with experts. A pilot study refined the items, followed by a cross-sectional study involving pediatric palliative patients and their caregivers. Statistical analyses, such as Cronbach's alpha for internal consistency and exploratory factor analysis for structural validity, were utilized.

Results: The PACOPED QL, comprising 50 items across 8 domains and 6 subdomains, demonstrated strong reliability with Cronbach's alpha and Guttman split-half reliability both exceeding .9. Validity assessments confirmed its suitability for children with complex illnesses. The tool was refined through expert consultations and pilot testing, reducing items from an initial 85 to a final 50, ensuring relevance and clarity.

Significance of results: The PACOPED QL shows strong reliability and validity in assessing QoL in pediatric palliative patients. Its comprehensive structure makes it a promising tool for clinical practice and research, addressing a critical need for a tailored assessment in this population. The instrument's robust psychometric properties indicate its potential utility in improving the QoL assessment and care for children with life-threatening illnesses. Further studies are encouraged to confirm its effectiveness across various settings.