Abstract
OBJECTIVE: The study objective was to assess longitudinal postoperative health-related quality of life among patients with adult congenital heart disease facilitated by a novel electronic medical record-based patient-reported outcomes follow-up platform. METHODS: From January 2022 to October 2023, 559 patients with adult congenital heart disease underwent cardiac surgery; 491 (88%) completed a 23-element health-related quality of life questionnaire covering 3 domains (physical, mental, and social) yielding 911 assessments. Automated questionnaires via electronic medical record were sent at 7 days preoperatively and postoperatively at 1, 3, 6, and 12 months. Nonlinear multiphase mixed effects models and boosting approach using multivariate trees were used to assess longitudinal trends and the relationship among patient characteristics, clinical variables, and health-related quality of life outcomes. RESULTS: Mean age of patients was 53 years (range, 19-86), 238 (43%) were female, 109 (20%) were STAT category 3 or 4, postoperative mortality was 0, and stroke was 4 (0.7%). Diagnosis included hypertrophic obstructive cardiomyopathy (276, 50%), anomalous coronary artery (42, 7.5%), congenital aortic valve disease (42, 7.5%), bicuspid aortic valve (64, 12%), and aortic aneurysm (25, 4.5%). Although baseline health-related quality of life scores were below population norms, rapid postoperative increases were seen in physical, mental, and social scores, surpassing population norms between 2 and 6 months. Patients with higher baseline health-related quality of life had higher longitudinal scores. Female patients and those of Black race had higher Area Deprivation Index and lower postoperative physical health-related quality of life scores. CONCLUSIONS: Patients with adult congenital heart disease require lifelong medical surveillance and repeated interventions. Our innovative electronic medical record-embedded time-series tool assessing health-related quality of life after cardiac surgery shows improved patient-reported outcomes across mental, physical, and social domains that endure through at least the first postoperative year.