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DECISION REGRET AND LONG-TERM QUALITY OF LIFE FOR ENDOSCOPIC SURVEILLANCE VS TOTAL GASTRECTOMY IN CDH1 PATIENTS
Divya Lakshmi Deverakonda1, Noah Xavier Tocci
1, Jared Hendren
1, Jenny H Chang
1, Erlind Allkushi
1, Breanna Perlmutter
1, Robert Naples
1, Daniel Joyce
1, Robert Simon
1, Carol A. Burke
1, R Matthew Walsh
11. General Surgery, Cleveland Clinic, Cleveland, OH, United States.
Introduction: Germline pathogenic variants (GPVs) in
CDH1 are associated with hereditary diffuse gastric cancer (GC) resulting in a near universal risk of T1a GC. Total Gastrectomy (TG) and endoscopic surveillance (ES) are both feasible management options. We aim to characterize long-term decision regret and quality of life for those with CDH1 mutations undergoing TG vs ES.
Methods: An institutional hereditary registry was queried for patients with
CDH1 GPVs. All patients were contacted for participation. Emotional distress (MICRA), quality of life (PROMIS, EORTC QLQ-STO22), financial toxicity (FACIT-COST), and decision regret (Ottawa Decision Regret). Surveys were obtained by telephone in respondents. Patient demographics, surgical and endoscopic outcomes were extracted from the medical record. Aggregate scores were compared via univariate analysis.
Results: 67 patients were identified. 18 were excluded (8 lost to follow-up, 10 deceased). Of 49 patients contacted, 20 (41%) completed all surveys and were included: 14 TG and 6 ES. Median age of genetic testing was 48 [32.5-59.75] and 56.5 [44-60.75] for TG and ES respectively. Median age at TG was 48 [34-61], and from surgery to survey was 6.1 [4.7-8.3] years. Median age at last ES and duration of ES was 65 yrs [48-70] and 7.9 [6.4-9.5] years, respectively. Only one ES patient developed GC during surveillance but has elected for continued ES. On surgical pathology, all patients had T1a disease except for 1 patient whose pathology is unavailable. Complications in TG patients included: Clavien Dindo Class 1 (n=1), 2 Class 3b (n=2), however there were no complications for endoscopy in either group. Median decision regret scores were 5 [0-17.5] for TG, and 2.5 [0-8.8] in ES (p=0.63). Median MICRA scores did not differ being 40 [23-47] in TG and 28 [21-34] in ES, (p=0.34) with no difference in distress (p=0.34), uncertainty (p=0.77), or positive experience (p=0.06) subscores. Median PROMIS t-score for mental health was 52.1 [45.8-55.3] in TG and 52.1 [47.1-55.3] for ES (p= 0.92). Median PROMIS t-score for physical health was 50.8 [47.7-54.1] in TG and 49.3 [45.6-50.8] for ES (p=0.58). EORTC QLQ-STO22 was 22 [14-30] and 23 [13-25], respectively (p= 0.62). Between TG and ES, FACIT-COST did not differ: 39 [30.25-40] and 40 [35.5-40.75], respectively (p=0.50).
Conclusion: In our retrospective study, TG and ES respondents expressed minimal regret. Reported outcomes for emotional distress, quality of life, and financial toxicity were comparable between groups suggesting patients with
CDH1 GPVs should be counseled on the overall satisfaction with either management strategy, and provided reassurance during the shared decision-making conversation when either option is medically appropriate.
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