PACE Questionnaire: Assessing Pediatric Cancer Care Quality
Publication Title: The Pediatric Cancer Care Experience (PACE) Questionnaire: Development and Validation of a Novel Instrument
Summary
- Question
- This study aimed to develop and validate a new questionnaire called the Pediatric Cancer Care Experience (PACE) to assess the quality of care and experiences of children with advanced cancer from the perspective of their parents. The researchers focused on creating a tool that measures key aspects of care, including therapeutic alliance, collaborative care, and communication about prognosis and decision-making.
- Why it Matters
Children with advanced cancer and their families often face complex medical decisions and care challenges. Measuring the quality of care from the family’s perspective is critical for improving healthcare delivery. Existing tools for this population are limited. PACE addresses this gap, enabling researchers and clinicians to evaluate and improve care quality, identify differences in care delivery across populations, and ensure family-centered approaches in pediatric oncology. Its findings have the potential to enhance patient satisfaction, symptom management, and overall care experiences.
- Methods
- The researchers created the PACE questionnaire by adapting items from existing validated tools and developing new items to address gaps. The questionnaire underwent revisions based on feedback from healthcare professionals and cognitive interviews with parents. It was then piloted in a cross-sectional study at eight U.S. medical centers, with 158 parents of children diagnosed with advanced cancer participating. Statistical methods, such as exploratory factor analysis, were used to refine the questionnaire and test its reliability and validity.
- Key Findings
- The PACE questionnaire demonstrated strong validity and reliability. It identified three key factors that define high-quality care for children with advanced cancer: therapeutic alliance (e.g., feeling understood by the oncology team), collaborative care (e.g., effective communication and teamwork), and prognostic communication with shared decision-making. These factors align with what families prioritize in care. The questionnaire was concise, taking less than 10 minutes to complete, and effectively measured the intended concepts.
- Implications
- PACE provides a robust tool for assessing care quality and family experiences in pediatric oncology. It can help identify areas for improvement, track care outcomes, and support family-centered approaches to treatment. By integrating PACE into clinical workflows or electronic health records, healthcare providers can systematically monitor and enhance care delivery for children with advanced cancer. Its use may also advance research into the relationships between care quality, family satisfaction, and patient outcomes.
- Next Steps
- The authors recommend translating and validating PACE for use in non-English-speaking populations to ensure cross-cultural applicability. They also suggest adapting the questionnaire for self-report by older children and adolescents. Future research could focus on deploying PACE in longitudinal studies to evaluate its responsiveness to changes in care over time and its ability to assess program performance.
- Funding Information
- This research was supported by the National Cancer Institute (award 1K08CA259222). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Full Citation
Kocinsky S, Lindsay M, De Oliveira S, Ananth P. The Pediatric Cancer Care Experience (PACE) Questionnaire: Development and Validation of a Novel Instrument. Journal Of Pain And Symptom Management 2025, 71: e173-e182. PMID: 41232624, PMCID: PMC12743596, DOI: 10.1016/j.jpainsymman.2025.10.034.
This AI-assisted summary has been reviewed and approved by at least one of the study's authors to ensure it accurately reflects the research.
Authors
Sona N Kocinsky
First AuthorPrasanna Ananth, MD, MPH
Last AuthorAssociate Professor of Pediatrics (Hematology Oncology)