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.

Adolescents and Adults With Congenital Heart Disease: Why Are They Lost to Follow-Up?

“…Nevertheless, many young ACHD patients still have an expectation that their ongoing care should not cost them anything. 36,39…”

“…14,40,41 Outreach ACHD services have been set up in New South Wales and Victoria in Australia. 39 Lammers et al reported the existence of a cluster of “time sensitive patients” who tended to be younger and with less serious CHD, who were more likely to rate factors such as shorter drive, wait times for an appointment, the ambience of the consulting rooms, and the punctuality of the attending clinician as important aspects to influence their ongoing involvement. 21 In contrast, those with more complex CHD tended to seek out more knowledgeable and experienced clinicians.…”

“…Nevertheless, many young ACHD patients still have an expectation that their ongoing care should not cost them anything. 36,39 Other barriers to ongoing care are related to the geographic proximity of the patient to the health care service. 14,40,41 Outreach ACHD services have been set up in New South Wales and Victoria in Australia.…”

“…The issues described are faced to a varying degree by ACHD patients worldwide, as voiced in a recent paper from Australia. 39 Nicolae et al in a Discussion Paper commissioned by the Cardiac Society of Australia and New Zealand lamented the under-resourced ACHD services currently available, the paucity of ACHD specialists, the lack of a formal training program, and the absence of rural services except in the few instances of outreach clinics. 18 Such difficulties are not unique to Australia.…”

Outpatient care of adults with congenital heart disease in the UK: a qualitative appraisal of the clinician perspective

“… 24 Remote consultation improves access for those living further away, having difficulty with transport or experiencing anxiety attending hospital. 25 These options and others could surpass the traditional clinic system in parallel with individualised surveillance pathways for anticipated medical complications.…”