The objective of this study was to create a psychometrically sound measure of family-centered care, the Family-Centered Care Assessment (FCCA), developed through a process led by families in collaboration with maternal and child health leaders. The items for the FCCA scale were initially developed by families of children and youth with special needs in partnership with pediatric providers and researchers. Using an Institutional Review Board-approved research protocol, the questions were revised based on input from focus groups of diverse parents in three states. Parental responses (N = 790) to the revised 59-item survey were collected online from families in 49 states. Item distributions uniformly showed excellent spread. A principal axes factor analysis confirmed the existence of a single factor. Rasch modeling item analyses identified a reduced subset of 24 items that demonstrated excellent psychometric properties. All items met the criteria for a linear Rasch scale. Empirical evidence in support of the construct validity of the 24-item measure was derived: all items had a positive and substantial item–total correlation; person alpha scale reliability was >0.80 and the item reliability was >0.90; both separation indices were >2.0; infit and outfit statistics were within 0.5–1.5; and item difficulties ranged between −2 and +2 logits. Strong rank-ordered associations and large effect sizes were observed for six indicators of quality of care. This study’s family-led process produced a tool, the FCCA, to measure families’ experience of care with excellent psychometric properties.

OBJECTIVES: In this study, we sought to establish priorities for a national research agenda for children and youth with special health care needs (CYSHCN) through a structured, multistakeholder, mixedmethods approach.METHODS: Using surveys, we solicited responses from .800 members of expert-nominated stakeholder organizations, including CYSHCN families, health care providers, researchers, and policymakers, to identify what research with or about CYSHCN they would like to see in a national research agenda. From 2835 individual free-text responses, 96 research topics were synthesized and combined. Using an adapted RAND/UCLA Appropriateness Method (a modified Delphi approach), an expert panel rated research topics across 3 domains: need and urgency, research impact, and family centeredness. Domains were rated on 9-point Likert scales. Panelist ratings were used to sort research topics into 4 relative-priority ranks. Rank 1 (highest priority) research topics had a median of $7 in all domains. RESULTS:The RAND/UCLA Appropriateness Method was used to prioritize CYSHCN research topics and depict their varying levels of stakeholder-perceived need and urgency, research impact, and family centeredness. In the 15 topics that achieved rank 1, social determinants of health (disparities and rurality), caregiving (family resilience and care at home), clinical-model refinement (effective model elements, labor divisions, telemedicine, and system integration), value (stakeholder-centered value outcomes, return on investment, and alternative payment models), and youth-adult transitions (planning, insurance, and community supports) were emphasized.CONCLUSIONS: High-priority research topics identified by CYSHCN experts and family leaders underscore CYSHCN research trends and guide important directions. This study is the first step toward an efficient and cohesive research blueprint to achieve highly-effective CYSHCN health systems.WHAT'S KNOWN ON THIS SUBJECT: Achieving comprehensive, effective, and coordinated systems for children and youth with special health care needs (CYSHCN) has been elusive. Realizing ideal health systems for CYSHCN requires research to concentrate on the most pressing issues identified by diverse stakeholders.WHAT THIS STUDY ADDS: As a step toward a national CYSHCN research agenda, diverse experts developed a research topic taxonomy, depicting varying levels of need and urgency, research impact, and family centeredness. Highest-ranked research topics were centered on social determinants of health, family resilience, value, and youth-adult transitions.

Key Points Question How do readmission rates vary across complex chronic disease for adolescents and young adults with increasing age? Findings In this cross-sectional study of 215 580 adolescents and young adults hospitalized for treatment of complex chronic diseases (cystic fibrosis, type 1 diabetes, inflammatory bowel disease, spina bifida, or sickle cell anemia), 30-day hospital readmission rates varied significantly across disease categories. As age increased from 15 to 30 years, unadjusted, 30-day, unplanned hospital readmission rates increased significantly for all complex chronic disease cohorts. Meaning Further attention is needed to hospital discharge care, self-management, and prevention of readmission in adolescents and young adults with complex chronic disease.

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