316 - Analyzing Patient Preferences as an Access to Care Measure: The Case of Congenital Heart Disease Care

Publication Number: 316.3739

Zofia Zdanowicz, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Christina Laternser, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Kristin Kan, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Amy S. Lay, Ann & Robert H. Lurie Children's Hospital of Chicago, Wilmette, IL, United States; Joyce Woo, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States

Background: High distance to care is a measure of access to care that has been associated with worse outcomes. However, such a discrete measure may not fully capture the access difficulties that patients experience. Thus, we sought to determine if patient accommodation preferences were more informative than distance to care on hospitalization-prolonging discharge barriers.

Objective: To estimate associations between preference to use a family-centered care facility (Ronald McDonald House, RMH), distance to care (a known access barrier), and discharge barriers among infants with severe congenital heart defects (CHD).

Design/Methods: This is a retrospective cohort study of infants who underwent initial cardiac surgery at < 12 months, between 2015-2021, at a high-volume CHD center. The outcome was having at least one discharge barrier (e.g., equipment teaching) that prolonged hospitalization. The exposure contained three categories: “RMH ineligible”; “RMH offered, no use”; and “RMH use”. “RMH ineligible” is a proxy for distance because those living < 15 miles from the hospital are ineligible for RMH. In this cohort, all living >15 miles from the hospital were offered RMH. Thus, “RMH offered, no use” measured patient preference, as those who were offered but didn’t use had other accommodation resources. “RMH use” were those who preferred to use the RMH facility. Covariates included demographics (e.g., race), CHD complexity scores (STAT category) and comorbidities (e.g., genetic syndromes). A multivariable linear probability model included time fixed effects and robust standard errors, with “RMH offered, no use” as the exposure variable’s reference category.

Results: 753 infants met inclusion criteria; 23% (n=174) experienced a discharge barrier (Table 1). The most common barriers were supervised caregiver stays (n=122, 70%), equipment teaching (n=58, 33%) and insurance authorization requests (n=39, 22%, Table 2). 45% (n=339) were “RMH ineligible”; 23% (n=176) “RMH offered, no use”; and 32% (n=238) “RMH use”. After adjustment, “RMH use” was associated with 14-percentage point higher probability (95%CI 6-22pp) of a discharge barrier than “RMH offered, no use”. However, probability of a discharge barrier between “RMH ineligible” versus “RMH offered, no use” was similar (6pp, 95%CI 1-12pp, Figure 1).

Conclusion(s): Compared to those living close to the hospital, those living farther did not experience more discharge barriers unless they chose to use RMH. Compared to discrete measures, patient preferences may better explain the relationships between access to care and outcomes.

Table 1: Patient Demographics, Disease Severity, Hospitalization Descriptors, and Ronald McDonald House Use
1 The Society of Thoracic Surgeons-European Association for Cardio-Thoracic Surgery (STAT) Category is a validated measure of congenital heart defect surgical complexity and mortality risk. Category 1 denotes lowest risk of mortality, whereas category 5 denotes highest risk of mortality.

Table 2: Discharge Barriers Among Infants with Severe Congenital Heart Defects (N=174)


Figure 1: Associations between Preference to Use Ronald McDonald House (RMH) and Discharge Barriers