Davies Brianna, Allan Katherine S, Carroll Sandra L, Gibbs Karen, Roberts Jason D, MacIntyre Ciorsti, Steinberg Christian, Tadros Rafik, Dorian Paul, Healey Jeff S, Gardner Martin, Laksman Zachary W M, Krahn Andrew D, Fournier Anne, Seifer Colette, Lauck Sandra B
Centre for Cardiovascular Innovation, St. Paul's and Vancouver General Hospitals, University of British Columbia, Vancouver, BC, Canada.
Division of Cardiology, St. Michael's Hospital, University of Toronto, Toronto, ON, Canada.
Front Cardiovasc Med. 2023 May 15;10:955060. doi: 10.3389/fcvm.2023.955060. eCollection 2023.
The role of multidisciplinary clinics for psychosocial care is increasingly recognized for those living with inherited cardiac conditions (ICC). In Canada, access to healthcare providers differ between clinics. Little is known about the relationship between access to specialty care and a patient's ability to cope with, and manage their condition.
We leveraged the Hearts in Rhythm Organization (HiRO) to conduct a cross-sectional, community-based survey of individuals with ICC and their family members. We aimed to describe access to services, and explore the relationships between participants' characteristics, cardiac history and self-reported health status and self-efficacy (GSE: General Self-Efficacy Scale) and empowerment (GCOS-24: Genetic Counseling Outcome Scale).
We collected 235 responses from Canadian participants in 10 provinces and territories. Overall, 63% of participants reported involvement of a genetic counsellor in their care. Access to genetic testing was associated with greater empowerment [mean GCOS-24: 121.14 (SD = 20.53) vs. 105.68 (SD = 21.69); = 0.004]. Uncertain genetic test results were associated with lower perceived self-efficacy (mean GSE: uncertain = 28.85 vs. positive = 33.16, negative = 34.13; = 0.01). Low global mental health scores correlated with both lower perceived self-efficacy and empowerment scores, with only 11% of affected participants reporting involvement of psychology services in their care.
Differences in resource accessibility, clinical history and self-reported health status impact the perceived self-efficacy and empowerment of patients with ICC. Future research evaluating interventions to improve patient outcomes is recommended.
多学科诊所对患有遗传性心脏病（ICC）的患者进行心理社会护理的作用日益得到认可。在加拿大，不同诊所的医疗服务提供者获取途径存在差异。对于获得专科护理与患者应对和管理自身病情能力之间的关系，人们知之甚少。
我们利用心律组织（HiRO）对患有ICC的个体及其家庭成员进行了一项基于社区的横断面调查。我们旨在描述服务获取情况，并探讨参与者的特征、心脏病史、自我报告的健康状况、自我效能感（一般自我效能感量表：GSE）和赋权感（遗传咨询结果量表：GCOS - 24）之间的关系。
我们从加拿大10个省和地区的参与者那里收集了235份回复。总体而言，63%的参与者报告有遗传咨询师参与他们的护理。获得基因检测与更强的赋权感相关[GCOS - 24平均得分：121.14（标准差 = 20.53） vs. 105.68（标准差 = 21.69）；P = 0.004]。基因检测结果不确定与较低的自我效能感相关（GSE平均得分：不确定 = 28.85，阳性 = 33.16，阴性 = 34.13；P = 0.01）。全球心理健康得分较低与自我效能感和赋权感得分较低均相关，只有11%的受影响参与者报告有心理服务参与他们 的护理。
资源可及性、临床病史和自我报告的健康状况方面的差异会影响ICC患者的自我效能感和赋权感。建议未来开展评估改善患者预后干预措施的研究。
