The Heart of the Matter — Transforming Congenital Heart Disease Care through Patient-Reported Outcomes

Patients with congenital heart disease (CHD) face substantial challenges in managing their chronic illness. Common and often unmet needs include neurocognitive challenges, mental health conditions, multiorgan disease, school and work impairment, and financial constraints. To improve the day-to-day lives of patients and advance success (beyond survival, residual disease, and reintervention rates), providers must systematically assess and address the repercussions of having CHD. This case study describes the adaptation and piloting of the International Consortium for Health Outcomes Measurement (ICHOM) CHD standard set of specific patient-reported outcomes (PROs) and patient-reported outcome measures (PROMs) among CHD patients in the Boston Children's Hospital outpatient cardiology setting. These measures cover the domains of mental health, physical health, neurodevelopment, education, employment, reproduction, and financial impact. The authors report on technology solutions developed to encourage engagement in PROs/PROMs and share early data trends.