Dataset Information

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.

SUBMITTER: Keir M

PROVIDER: S-EPMC7710945 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature

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

Keir Michelle M Penner Marie M Dehghani Payam P Neudorf Cordell C Lim Hyun J HJ Bradley Timothy J TJ Bree Terry T Kakadekar Ashok A

CJC open 20200529 6

<h4>Background</h4>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.<h4>Methods</h4>We performed a telephone survey of patients with CHD ...[more]

PMID: 33305202

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

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

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