How do Adults With Congenital Heart Disease Evaluate Their Clinical Care?

Abstract

Background Almost 90% of patients with congenital heart disease (CHD) now reach adulthood. How do they evaluate the care they received? Methods Adults with CHD (ACHD) recruited for an international multi-center study (APPROACH-IS II) were posed 3 additional “questions” to determine their perceptions of the positive, negative, and areas for improvement of their clinical care. The findings underwent a thematic analysis. Results Of the 210 recruited, 183 completed the questionnaire, 147 answered the 3 “questions.” Most appreciated open communication and support, a holistic approach, continuity of and readily accessible care conducted by experts, and with good outcomes. Less than half reported negative concerns which included loss of autonomy, distress from multiple and/or painful investigations, restricted lifestyles, medication side-effects, and anxiety about their CHD. Others found their reviews time-consuming with long travel times. Some complained of limited support, poor accessibility to services in rural areas, shortage of ACHD specialists, absence of tailored rehabilitation programs, and at times their own as well as their clinicians’ limited understanding of their CHD. Suggestions for improvement included better communication, further education about their CHD, availability of simplified written information, mental health and support services, support groups, seamless transition to adult care and providing better prognostications, financial assistance, flexible appointments, telehealth reviews, and greater access to rural specialist care. Conclusions In addition to providing optimal medical and surgical care for ACHD, clinicians need to be cognizant of their patients’ concerns and proactive in addressing them.