Chanouha Nour, Thoeny Renata, Summers Karen, Zorn Alithea, Duran Hakan, Schaa Kendra
Division of Reproductive Endocrinology and Infertility, Department of Obstetrics & Gynecology, University of Iowa Health Care, Iowa City, IA, USA.
College of Public Health, Center for Public Health Statistics, University of Iowa, Iowa City, IA, USA.
J Assist Reprod Genet. 2025 Jan;42(1):153-164. doi: 10.1007/s10815-024-03313-4. Epub 2024 Nov 15.
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.
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.
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 (r = - 0.42, p < 0.05). In-person GC visit scored highest among proposed education methods (mean score of 84.1).
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.
通过一项混合方法横断面研究,了解在没有遗传咨询师(GC)的体外受精(IVF)诊所中,影响患者对遗传学教育和心理社会支持满意度的因素,以及遗传咨询师的角色如何填补护理中的空白。
既往IVF患者(n = 133)完成了一项调查,评估对遗传学教育和心理社会支持的满意度以及对基因检测的决策冲突。使用Kruskal-Wallis检验比较满意度与人口统计学和临床变量。Spearman相关性用于分析决策冲突。共有12名参与者的焦点小组详细阐述了调查回复中确定的主题。使用解释性描述进行主题分析。
参与者报告对其遗传学教育经历感到满意(78.9%有点或非常满意)。对遗传学教育的满意度与对收到的基因检测结果信息的满意度相关(H = 21.3,p < 0.01),以及在未来决策中使用结果的信心相关(H = 9.9,p < 0.01)。参与者希望在基因检测前和检测后获得全面的咨询以及指导性指导。关于基因检测的决策冲突较低(平均22.3,范围0 - 100)。对遗传学教育的满意度与决策冲突呈负相关(r = - 0.42,p < 0.05)。在提议的教育方法中,亲自拜访遗传咨询师得分最高(平均得分84.1)。
患者对临床提供者提供的遗传学教育和心理社会支持感到满意。护理中的空白包括对基因检测的误解、希望对基因检测选项进行更全面的咨询、更多的指导性指导,以及通过支持小组等外部来源增加心理社会支持。