Home is Where the Heart is: Disparities Identified with a Digital Program for Congenital Heart Surgery Follow-Up

Consistent longitudinal follow-up of congenital heart surgery (CHS) patients is often difficult to achieve and varies based on cardiac complexity and families' socioeconomic status. We assessed CHS patient/caregiver responses to our questionnaire-based follow-up program, Discharge Communications (DisCo), to address disparities in follow-up. Single-center retrospective review of consecutive patients discharged after CHS between 10/2016 and 5/2024. Outcomes included response rate and responses to questions at 30-days and 1-year post-discharge. Child Opportunity Index (COI) was categorized as very low, low, moderate, high, and very high using home address. Covariates were patient/procedural characteristics. Associations between response rates and covariates were evaluated. DisCo received responses from 5438 (88%) of 6211 30-day questionnaires and 3767 (70%) of 5372 1-year questionnaires. Upon analysis, respondents (versus non-respondents) were less likely to have low or very low COI and more likely to have very high COI (p < 0.001, both). Other significant predictors included age, procedural complexity, race, and ethnicity. Patients with lower COI levels (versus very high) were more likely to report rehospitalization (p = 0.002 at 30-day, p = 0.011 at 1-year) and surgical reintervention (p = 0.012 at 1-year). Patients with very low or low COI, Black or Other race, and Hispanic ethnicity were more likely to respond by phone call versus other outreach (p < 0.001, all). DisCo is a useful digital tool for staying in touch with families, particularly with populations vulnerable to loss of follow-up. While child opportunity was associated with adverse outcomes, optimizing DisCo outreach may be an effective strategy to identify disparities in CHS follow-up.