Muir Jennifer, Aronson Melyssa, Esplen Mary-Jane, Pollett Aaron, Swallow Carol J
Department of Laboratory Medicine and Pathobiology, University of Toronto, Toronto, ON, Canada.
Department of Surgery, University of Toronto, Toronto, ON, Canada.
J Gastrointest Surg. 2016 Dec;20(12):1950-1958. doi: 10.1007/s11605-016-3287-8. Epub 2016 Oct 17.
Hereditary diffuse gastric cancer (HDGC) syndrome is caused by germline mutations in the CDH1 gene and carries a lifetime gastric cancer risk of approximately 70 % in men and 56 % in women. Current consensus guidelines recommend that people of age ≥20 who harbor a CDH1 mutation undergo prophylactic total gastrectomy (PTG). However, the decision to proceed with a major visceral resection for prophylactic reasons may be difficult, especially since long-term outcomes are not well defined. We examined the decision-making process, physical symptoms, and psychosocial outcomes in adults who underwent PTG.
Participants completed pre- and post-operative questionnaires that included standardized measures of health-related quality of life (HRQOL), body image, psychological distress, regret, and decisional conflict. Those who declined surgery completed a questionnaire that measured decisional conflict and explored reasons for their choice.
Forty of fifty (80 %) questionnaires distributed to 18 individuals were completed. In the 13 patients who underwent PTG, global HRQOL tended to decrease immediately post-operatively, climb to baseline by 6-12 months, then decrease again at 24 months. Body image and level of psychological distress remained relatively stable, and most patients expressed little decisional conflict or regret. All five individuals who declined surgery did so for practical reasons and would consider surgery in the future.
While most patients do not experience negative psychosocial consequences following PTG, mild physical symptoms persist and may affect long-term HRQOL. The present study emphasizes the need for long-term follow-up of this unique population of survivors.
遗传性弥漫性胃癌（HDGC）综合征由CDH1基因的种系突变引起，男性终生患胃癌的风险约为70%，女性为56%。目前的共识指南建议，携带CDH1突变的20岁及以上人群应接受预防性全胃切除术（PTG）。然而，出于预防目的而进行主要内脏切除术的决定可能很困难，尤其是因为长期结果尚不明确。我们研究了接受PTG的成年人的决策过程、身体症状和心理社会结果。
参与者完成了术前和术后问卷，其中包括与健康相关的生活质量（HRQOL）、身体形象、心理困扰、遗憾和决策冲突的标准化测量。那些拒绝手术的人完成了一份测量决策冲突并探究其选择原因的问卷。
分发给18名个体的50份问卷中有40份（80%）完成。在接受PTG的13名患者中，总体HRQOL在术后立即趋于下降，在6 - 12个月时回升至基线水平，然后在24个月时再次下降。身体形象和心理困扰程度保持相对稳定，大多数患者表示决策冲突或遗憾较少。所有5名拒绝手术的个体都是出于实际原因，并且将来会考虑手术。
虽然大多数患者在PTG后没有经历负面的心理社会后果，但轻微的身体症状仍然存在，并且可能影响长期HRQOL。本研究强调了对这一独特的幸存者群体进行长期随访的必要性。
