优化体外受精(IVF)诊所患者体验的机会和遗传咨询师的作用。

IF 3.2 3区 医学 Q2 GENETICS & HEREDITY Journal of Assisted Reproduction and Genetics Pub Date : 2024-11-15 DOI:10.1007/s10815-024-03313-4
Nour Chanouha, Renata Thoeny, Karen Summers, Alithea Zorn, Hakan Duran, Kendra Schaa
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引用次数: 0

摘要

目的:通过一项混合方法横断面研究,了解在没有遗传咨询师(GC)的试管婴儿诊所中影响患者对遗传学教育和社会心理支持满意度的因素,以及遗传咨询师的作用如何弥补医疗服务的不足:方法:既往试管婴儿患者(n = 133)完成了一项调查,评估对遗传学教育和社会心理支持的满意度,以及对基因检测决策冲突的满意度。采用 Kruskal-Wallis 检验将满意度与人口统计学和临床变量进行比较。斯皮尔曼相关性用于分析决策冲突。共有 12 人参加的焦点小组对调查反馈中确定的主题进行了扩展。采用解释性描述进行了主题分析:结果:参与者对他们的遗传学教育经历表示满意(78.9% 表示比较满意或非常满意)。对遗传学教育的满意度与对遗传检测结果信息的满意度相关(H = 21.3,P s = - 0.42,P 结论:患者对临床医疗人员提供的遗传学教育和心理支持感到满意。医疗服务的不足之处包括对基因检测的误解、希望获得有关基因检测选择的更全面咨询、更有指导性的指导,以及通过支持小组等外部渠道增加社会心理支持。
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Opportunities to optimize patient experience in the in vitro fertilization (IVF) clinic and the role of genetic counselors.

Purpose: To understand factors influencing patient satisfaction with genetics education and psychosocial support in an IVF clinic without a genetic counselor (GC), and how the role of a GC may fill gaps in care using a mixed-method cross-sectional study.

Methods: Previous IVF patients (n = 133) completed a survey assessing satisfaction with genetics education and psychosocial support and decisional conflict about genetic testing. Kruskal-Wallis tests were used to compare satisfaction level to demographic and clinical variables. Spearman's correlation was used to analyze decisional conflict. Focus groups with 12 total participants expanded on themes identified in survey responses. Thematic analysis was performed using interpretive description.

Results: Participants reported satisfaction with their genetics education experience (78.9% somewhat or extremely satisfied). Satisfaction with genetics education was associated with satisfaction with information received about genetic testing results (H = 21.3, p < 0.01) and confidence using results in future decisions (H = 9.9, p < 0.01). Participants desired thorough pre-test and post-test counseling regarding genetic testing and directive guidance. Decision conflict about genetic testing was low (mean of 22.3, range 0-100). Satisfaction with genetics education was inversely correlated with decisional conflict (rs = - 0.42, p < 0.05). In-person GC visit scored highest among proposed education methods (mean score of 84.1).

Conclusions: Patients felt satisfied with genetics education and psychosocial support provided by clinical providers. Gaps in care included misconceptions regarding genetic testing, a desire for more thorough counseling about genetic testing options, more directive guidance, and increased psychosocial support through external sources such as support groups.

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来源期刊
CiteScore
5.70
自引率
9.70%
发文量
286
审稿时长
1 months
期刊介绍: The Journal of Assisted Reproduction and Genetics publishes cellular, molecular, genetic, and epigenetic discoveries advancing our understanding of the biology and underlying mechanisms from gametogenesis to offspring health. Special emphasis is placed on the practice and evolution of assisted reproduction technologies (ARTs) with reference to the diagnosis and management of diseases affecting fertility. Our goal is to educate our readership in the translation of basic and clinical discoveries made from human or relevant animal models to the safe and efficacious practice of human ARTs. The scientific rigor and ethical standards embraced by the JARG editorial team ensures a broad international base of expertise guiding the marriage of contemporary clinical research paradigms with basic science discovery. JARG publishes original papers, minireviews, case reports, and opinion pieces often combined into special topic issues that will educate clinicians and scientists with interests in the mechanisms of human development that bear on the treatment of infertility and emerging innovations in human ARTs. The guiding principles of male and female reproductive health impacting pre- and post-conceptional viability and developmental potential are emphasized within the purview of human reproductive health in current and future generations of our species. The journal is published in cooperation with the American Society for Reproductive Medicine, an organization of more than 8,000 physicians, researchers, nurses, technicians and other professionals dedicated to advancing knowledge and expertise in reproductive biology.
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