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Barriers and facilitators to CDH1 carriers contemplating or undergoing prophylactic total gastrectomy.
Familial Cancer ( IF 2.2 ) Pub Date : 2020-08-05 , DOI: 10.1007/s10689-020-00197-y
Kaitlin M McGarragle 1 , Tae L Hart 1, 2 , Carol Swallow 1, 3, 4 , Savtaj Brar 1, 4, 5 , Anand Govindarajan 1, 4, 5 , Zane Cohen 1, 4, 5 , Melyssa Aronson 1, 6
Affiliation  

Hereditary diffuse gastric cancer (HDGC) is an inherited cancer syndrome associated with high lifetime risk of diffuse-type gastric cancer. Current guidelines recommend individuals with HDGC undergo prophylactic total gastrectomy (PTG) to eliminate this risk. However, PTG is associated with significant lifestyle changes, post-surgical recovery, and symptom burden. This study examined factors related to decision-making about PTG in three groups of individuals who: (1) underwent PTG immediately after receiving genetic testing results; (2) delayed PTG by ≥ 1 year or; (3) declined PTG. Participants were recruited from a familial gastric cancer registry at a tertiary care hospital. Patients with CDH1 pathogenic or likely pathogenic variants who contemplated and/or underwent PTG were eligible. 24 individuals contemplated PTG: 9 had immediate surgery (within a year), 8 delayed surgery, and 7 declined surgery. Data on PTG barriers and facilitators were obtained on all participants using quantitative surveys (n = 7), qualitative interviews (n = 8) or both methods (n = 9). PTG barriers included age, positive beliefs about screening, close relatives with negative PTG experiences, fertility-related concerns, and life stress. Facilitators included social support, trust in healthcare providers, understanding risk, negative beliefs about screening, family-related factors, positive or abnormal screening results, and positive attitude toward PTG. This study highlights factors related to the PTG decision-making process among individuals with HDGC from three distinct groups. Future research should explore educational interventions aimed at addressing surgery-related concerns and the limitations of screening, and might also consider incorporating close relatives as informational supports.



中文翻译:

考虑或接受预防性全胃切除术的 CDH1 携带者的障碍和促进因素。

遗传性弥漫性胃癌(HDGC)是一种遗传性癌症综合征,与弥漫型胃癌的高终生风险相关。目前的指南建议 HDGC 患者进行预防性全胃切除术 (PTG) 以消除这种风险。然而,PTG 与显着的生活方式改变、术后恢复和症状负担有关。本研究在以下三组个体中检查了与 PTG 决策相关的因素:(1)在收到基因检测结果后立即接受 PTG;(2) 延迟 PTG ≥ 1 年或;(3) 谢绝PTG。参与者是从一家三级医院的家族性胃癌登记处招募的。CDH1患者考虑和/或接受 PTG 的致病性或可能致病性变异符合条件。24 人考虑进行 PTG:9 人立即手术(一年内),8 人延迟手术,7 人拒绝手术。使用定量调查 (n = 7)、定性访谈 (n = 8) 或两种方法 (n = 9) 获得所有参与者的 PTG 障碍和促进因素的数据。PTG 障碍包括年龄、对筛查的积极信念、具有负面 PTG 经历的近亲、与生育相关的担忧和生活压力。促进因素包括社会支持、对医疗保健提供者的信任、了解风险、对筛查的负面看法、家庭相关因素、阳性或异常筛查结果以及对 PTG 的积极态度。本研究强调了与来自三个不同群体的 HDGC 个体的 PTG 决策过程相关的因素。未来的研究应探索旨在解决手术相关问题和筛查局限性的教育干预措施,并可能考虑将近亲纳入信息支持。

更新日期:2020-08-05
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