Barriers to Care in ACHD: A Study of Young Adults in Saskatchewan

Abstract

Background Adults with congenital heart disease (CHD) are living longer with more complex disease. Maintaining lifelong care prevents morbidity and mortality, but many patients remain lost to follow-up or experience care gaps. We sought to assess barriers to care for patients with adult CHD (ACHD) in Saskatchewan, a Canadian province with no local congenital cardiac surgical support and no clear framework for ACHD care. Methods We performed a telephone survey of patients with CHD transferred from pediatric to adult cardiology from 2007 to 2014. Our primary outcome was loss to follow-up > 2 years from last recommended cardiology appointment and/or multiple missed cardiology appointments. Secondary outcomes were guideline-based care (specialist training, adherence to appropriate endocarditis prophylaxis, pre-pregnancy counselling for women), presence or absence of previously described barriers to care in ACHD, and health care autonomy using the Krantz Health Opinion Survey. Results We interviewed 32 patients (30% response rate). One-quarter met the primary outcome: lost to follow-up > 2 years from last recommended cardiology appointment and/or self-report of missed cardiology appointments. Only 69% of young adults in Saskatchewan were receiving guideline-based care for their CHD (appropriate level of specialist expertise and frequency of follow-up). Only 72% of patients were adhering to endocarditis prophylaxis recommendations and 61% of women surveyed received counselling regarding pregnancy. Patients indicated a low preference for participating in decision making regarding their care on the Krantz Health Opinion Survey. Conclusions With our survey, we have created a novel snapshot of CHD care in Saskatchewan and have identified significant deficits.

Qualitative study of facilitators and barriers for continued follow-up care as perceived and experienced by young people with congenital heart disease in Sweden

“…The contrast between paediatric and adult care has been previously described. Patients in a recent study 26 provided comments, which they thought, could improve care for young people with CHD. For example, when attending the adult clinic, patients described feeling rushed and like they were nothing more than a number in the system.…”

“…In contrast, at the paediatric clinic, they experienced the HCPs as having more time for information and building relationships. 26 There seems to be a need for increased knowledge about the developmental phase of adolescence and emerging adulthood and how to communicate with young people and address their specific needs. The results also indicate a need for improved transitional work.…”

“…9 Self-reported reasons for missing appointments included, missed appointment letters due to unstable housing, weather conditions making travel difficult, difficulty scheduling appointments and anxiety about cardiac health. 26 Reasons for returning to care were, for example, new symptoms and the desire to prevent complications. 9 In-depth understanding of factors perceived by young people as affecting continued follow-up care is needed to tailor effective preventive strategies for discontinuation.…”

“… 24 Few studies have addressed young peoples’ perceptions and experiences of factors affecting continued follow-up care after transfer. Three of the existing studies have identified self-reported reasons for discontinuation, 6 9 missed appointments 26 and reasons for returning to follow-up care. 9 Reasons for discontinuation were for example, being told that follow-up care was not needed, feeling well, 6 fear of bad news, insurance issues, 6 9 losing track of time and parents being less involved.…”

“… 9 Self-reported reasons for missing appointments included, missed appointment letters due to unstable housing, weather conditions making travel difficult, difficulty scheduling appointments and anxiety about cardiac health. 26 Reasons for returning to care were, for example, new symptoms and the desire to prevent complications. 9 …”