Keir Michelle, Penner Marie, Dehghani Payam, Neudorf Cordell, Lim Hyun J, Bradley Timothy J, Bree Terry, Kakadekar Ashok
Southern Alberta Adult Congenital Heart Clinic, Libin Cardiovascular Institute, University of Calgary, Calgary, Alberta, Canada.
Division of Pediatric Cardiology, University of Saskatchewan, Saskatoon, Saskatchewan, Canada.
CJC Open. 2020 May 29;2(6):439-446. doi: 10.1016/j.cjco.2020.05.008. eCollection 2020 Nov.
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.
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.
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.
With our survey, we have created a novel snapshot of CHD care in Saskatchewan and have identified significant deficits.
患有先天性心脏病（CHD）的成年人寿命延长，疾病也更为复杂。提供终身护理可预防发病和死亡，但许多患者仍失访或存在护理缺口。我们试图评估加拿大萨斯喀彻温省成年先天性心脏病（ACHD）患者的护理障碍，该省没有当地先天性心脏外科支持，也没有明确的ACHD护理框架。
我们对2007年至2014年从儿科转诊至成人心脏病科的CHD患者进行了电话调查。我们的主要结局是自上次推荐的心脏病学预约起失访超过2年和/或多次错过心脏病学预约。次要结局包括基于指南的护理（专科培训、适当的心内膜炎预防措施的依从性、女性孕前咨询）、ACHD中先前描述的护理障碍的存在与否，以及使用克兰茨健康意见调查评估的医疗保健自主性。
我们采访了32名患者（回复率为30%）。四分之一的患者达到主要结局：自上次推荐的心脏病学预约起失访超过2年和/或自我报告错过心脏病学预约。萨斯喀彻温省只有69%的年轻人接受基于指南的CHD护理（专科专业知识水平和随访频率适当）。只有72%的患者坚持心内膜炎预防建议，接受调查的女性中有61%接受了妊娠咨询。患者在克兰茨健康意见调查中表示对参与其护理决策的偏好较低。
通过我们的调查，我们了解了萨斯喀彻温省CHD护理的新情况，并发现了重大缺陷。
