Objective: No validated tools exist to measure pediatric home healthcare quality. The objective of this work was to develop a family-reported survey (PediHome) to measure the quality of home healthcare for children with medical complexity (CMC). Methods: A national multidisciplinary expert panel (N = 19) was convened to develop survey content domains. Panelist were joined by 3 additional experts to rank candidate survey items for importance and evaluate relevance and structure. Cognitive interviews were conducted with English-speaking (n = 12) and Spanish-speaking (n = 4) family caregivers of CMC to revise problematic items and clarify response options. A cross-sectional survey was then fielded (6/1/20–10/31/20) to parents whose children receive healthcare at 2 regional academic medical centers. Results: The final measure included N = 28 total items with 4 items quantifying access, 1 evaluating overall quality rating, and 21 items assessing provider tasks (11 home nursing only, 2 certified nursing assistant/home health aide only, and 1 dual). Out of 312 caregivers of CMC, 142 (46%) responded and one-half (n = 68, 48%) reported a child receiving home nursing. They received a weekly median of 58.4% (IQR ±31.2%) of approved nursing hours with 55% reporting a missed nursing shift within the last month. Median overall quality was 75-9 (0–10 scale) and median scores on specific quality items ranged from 31-4 to 43-4 (0–4 scale). Conclusions: PediHome is a new content-valid family-reported measure of home healthcare quality for CMC that is useful for evaluating healthcare quality across several domains. Future work will involve assessing PediHome's construct and predictive validity.
- children with medical complexity
- children with special health care needs
- home healthcare