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Developing a Measure of Relational Outcomes Between Families and Pediatric Complex Care Programs
Douglas L Hill1, Olivia O Familusi2, Karen W Carroll1
1Justin Ingerman Center for Palliative Care, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
Hospital Pediatrics
|May 4, 2026
Summary
A new questionnaire, the Relational Outcomes (ReOs) Measure, was developed to assess relationships between families of children with medical complexity and their Complex Care Programs (CCPs). This tool helps understand factors influencing CCP effectiveness.
Area of Science:
- Pediatric Healthcare
- Patient-Reported Outcomes
- Health Services Research
Background:
- Complex Care Programs (CCPs) aim to support children with medical complexity (CMC).
- The effectiveness of CCPs varies, potentially due to family-clinician relationship dynamics.
- Understanding these relational outcomes is crucial for improving CCPs.
Purpose of the Study:
- To develop a parent-reported questionnaire, the Relational Outcomes (ReOs) Measure.
- To assess key relationship outcomes between families of CMC and their CCP clinicians.
- To provide a tool for evaluating the relational aspects of CCP care.
Main Methods:
- Developed 15 questionnaire items based on literature and clinical experience.
- Conducted interviews with 14 parents (English and Spanish versions) for feedback.
- Assessed clarity, comprehensiveness, and relevance of items with parents and health professionals.
Main Results:
- Parents found the questionnaire items clear, understandable, and relevant to their experiences.
- Items captured important aspects of the family-CCP relationship.
- The measure was refined based on feedback, with 14 items retained, 1 revised, and 1 added.
Conclusions:
- The Relational Outcomes (ReOs) Measure effectively assesses critical relationship outcomes.
- This tool can evaluate the quality of relationships within Complex Care Programs.
- Findings support the importance of relational factors in CCP effectiveness for children with medical complexity.
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