653 Can We Improve the Clinical Experience of Adults With Congenital Heart Disease?

Abstract

Over 90% of patients with congenital heart disease (CHD) now reach adulthood. They were asked of their impression of their clinical care and suggestions for improvement. Adults with CHD were recruited from a cardiology practice as part of an international study (APPROACH-IS II). They completed three additional questions highlighting the positives, negatives and areas for improvement of their clinical care. Thematic analysis was used to review the findings. To date of the 79 participants recruited, 50 have completed their questionnaires. 39 have answered the additional research questions. Most highlighted their appreciation of open communication and feeling supported. Good clinical outcomes, continuity, accessibility and thoroughness of their care were also key positives. Of interest over half of the participants failed to document negative concerns. Those that did, emphasised the impact CHD had on their lifestyle through the time commitment, cost of services and side effects of medications. Few patients were dissatisfied with public hospitals’ long wait times for surgery, poorer communication and lack of rehabilitation programs for young CHD patients. Some complained of limited understanding of the complexity of their CHD, previously explained to their parents and little understood by their general practitioners. Areas of improvement included the need for additional information about their CHD, availability of mental health services and support groups, together with improved transition from paediatric to adult services with ongoing review of their CHD and its prognosis. Understanding the concerns of adults with CHD and meeting their expectations may well improve their outcomes.