Objective: Hospital discharge education and patient discharge readiness are linked to successful transition to home care. In adults discharged from general medical-surgical units, greater discharge readiness is associated with 1) improved medical adherence and resource utilization, 2) less complications and 3) lower readmissions. There have been no major studies examining discharge readiness in the congenital heart disease (CHD) population. In CHD, discharge readiness focuses on needs assessment and streamlining of discharge education via dedicated discharge planners, bedside nurse teaching, and nesting protocols. This study aimed to describe parent perceptions of their own discharge readiness and their perceived discharge readiness of their child and their level of clinical engagement following congenital heart surgery within the first month post-discharge. 

Methods and Results: All participants in the study were English-speaking parents of children (aged 0 to 18 years) who underwent congenital heart surgery at a large pediatric tertiary referral center between April and December 2021. Parents completed a validated survey instrument (the Modified Readiness for Hospital Discharge Scale, mRHDS) within 24 hours of discharge. Median mRHDS scores were categorized as Very High (9-10), High (8-8.9), Moderate (7-7.9), and Low (<7). Patient clinical characteristics and clinical outcome data 30 days post-discharge were collected. Comparisons between groups were performed using Chi-square tests for normally distributed data and Wilcoxon Rank-Sum for non-normally distributed data. Regression models were created to explore any predictive factors for discharge readiness.

A total of 128 families (out of 199 eligible) consented and completed the survey. Overall, caregivers responded favorably (‘High’ or greater) on the mRHDS survey with the exception of “Child Personal Status” (Domain 2) which was rated ‘Moderate’. There were no differences in survey responses based on surgical complexity (STAT category, p=0.60). There were no predictors identified using the regression models. In terms of clinical engagement, families of lower SES were more likely to bring their child to the ED (34% vs 15%, p=0.02) and be readmitted to the hospital (32% vs 15%, p=0.03). Patients in the ‘interstage’ period had more clinic visits, ED visits, and hospital readmission compared to other infants and children.

Conclusion: This descriptive study characterizes parent’s perception of discharge readiness after surgical repair of CHD and suggests that although families feel generally ready for discharge as evidenced by a high mRHDS score. There is a significantly higher proportion of patients that visit the ED and get readmitted to the hospital in certain groups. Interestingly, these groups include caregivers from perceived vulnerable populations including parents of younger patients, those with lower SES, and first time surgeries. This suggests that additional complementary resources, including novel interventions targeting parental recognition of medical emergencies, such as virtual reality simulations, may be useful to improve caregiver readiness and decrease post-discharge resource utilization. In addition, further research is needed to capture a more diverse and representative patient population over time.