Assistant Professor Ann & Robert H. Lurie Children's Hospital of Chicago/Northwestern University Chicago, Illinois, United States
Background: Recent reports have suggested a concerning lack of accessible high-quality home healthcare (HHC) for children with medical complexity (CMC). However, no current reliable methods exist to measure what constitutes accessible high-quality HHC for CMC.
Objective: To 1) develop a family-reported survey (PediHome) to measure the quality of HHC for CMC and 2) apply PediHome in a clinical sample of CMC to assess pediatric HHC quality.
Design/Methods: We convened a multidisciplinary national expert panel (n=22) to prioritize survey content using a pre-published conceptual framework and extant literature. Panelists qualitatively reviewed and scored pre-test items for relevance, importance, and wording. Next, cognitive interviews were conducted with English- and Spanish-speaking family caregivers of CMC (n=12 & n=4, respectively) to revise problematic items and clarify response options. Finalized items were programmed into an electronic survey and tested for accuracy and flow.
We then conducted a cross-sectional survey of CMC family caregivers identified from two complex care and coordination programs nationally. Respondents had to be >18 yrs. old, English- and/or Spanish-speaking, and a legal guardian. CMC had to be <21 yrs. old. Eligible families were approached by phone, email, and/or letter (6/1/20-10/31/20), consented, and received a $15 gift card for participation. We conducted descriptive statistics and analyzed the relationship between respondent characteristics and survey items using covariate-adjusted linear or logistic regression.
Results: Twenty-five survey items were included, of which 3 quantified nursing receipt amount, 1 assessed overall quality, and 21 focused on specific quality domains. Of 312 families approached, 142 participated (46%) of which 62 (48%) had a CMC receiving home nursing. Respondent and patient characteristics are presented in Tables 1-2. Families reported their CMC received a weekly mean of 58.4% (SD ±31.2%) of approved nursing hours with 55% reporting a missed nursing shift within a month. Mean overall quality was 6.5 (2.9) (scaled 0-10) and specific quality item scores ranged from 2.4 (1.5) to 3.4 (0.9) (scaled 0-4) (Table 3). Having a White non-Hispanic parent was associated with a reduced likelihood of missed shifts (aOR=0.19, 95% CI [0.04, 0.78]). Conclusion(s): PediHome is a new content-valid family-reported measure of HHC quality for CMC that permitted measurement of deficits in quality across several domains. Future work will involve assessing Pedihome’s construct and predictive validity.
Table 1
Table 2 - Part 1
Table 2 - Part 2
Table 3
Authors/Institutions: Carolyn C. Foster, Northwestern University/Lurie Children's Hospital of Chicago, Chicago, Illinois, United States; Aaron J. Kaat, Northwestern University Feinberg School of Medicine, Chicago, Illinois, United States; Elaine Lin, Mount Sinai Hospital, Jersey City, New Jersey, United States; Sara Shaunfield, Northwestern University Feinberg School of Medicine, Chicago, Illinois, United States; Matthew M. Davis, Northwestern University/Lurie Children's Hospital of Chicago, Chicago, Illinois, United States
