A Healthy Life for a Child With Medical Complexity: 10 Domains for Conceptualizing Health

Abstract

BACKGROUND AND OBJECTIVES: Defining and measuring health for children with medical complexity (CMC) is poorly understood. We engaged a diverse national sample of stakeholder experts to generate and then synthesize a comprehensive list of health outcomes for CMC. METHODS: With national snowball sampling of CMC caregiver, advocate, provider, researcher, and policy or health systems experts, we identified 182 invitees for group concept mapping (GCM), a rigorous mixed-methods approach. Respondents (n = 125) first completed Internet-based idea generation by providing unlimited short, free-text responses to the focus prompt, “A healthy life for a child or youth with medical complexity includes: ___.” The resulting 707 statements were reduced to 77 unique ideas. Participants sorted the ideas into clusters based on conceptual similarity and rated items on perceived importance and measurement feasibility. Responses were analyzed and mapped via GCM software. RESULTS: The cluster map best fitting the data had 10 outcome domains: (1) basic needs, (2) inclusive education, (3) child social integration, (4) current child health-related quality of life, (5) long-term child and family self-sufficiency, (6) family social integration, (7) community system supports, (8) health care system supports, (9) a high-quality patient-centered medical home, and (10) family-centered care. Seventeen outcomes representing 8 of the 10 domains were rated as both important and feasible to measure (“go zone”). CONCLUSIONS: GCM identified a rich set of CMC outcome domains. Go-zone items provide an opportunity to test and implement measures that align with a broad view of health for CMC and potentially all children.