Barriers and facilitators to CDH1 carriers contemplating or undergoing prophylactic total gastrectomy - PubMed

Barriers and facilitators to CDH1 carriers contemplating or undergoing prophylactic total gastrectomy - PubMed

Barriers and facilitators to CDH1 carriers contemplating or undergoing prophylactic total gastrectomy

Kaitlin M McGarragle 1, Tae L Hart 2 3, Carol Swallow 1 4 5, Savtaj Brar 1 5 6, Anand Govindarajan 1 5 6, Zane Cohen 1 5 6, Melyssa Aronson 1 7

Affiliations 

• PMID: 32754788
 
• DOI: 10.1007/s10689-020-00197-y

Abstract

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.

Keywords: CDH1; Decision-making; Hereditary diffuse gastric cancer; Prophylactic surgery.

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