BackgroundPancreatic cancer screening is recommended to individuals at risk (IAR) of familial pancreatic cancer (FPC) families, but little is known about the acceptance of such screening programs. Thus, the acceptance and psychological aspects of a controlled FPC screening program was evaluated.MethodsIAR of FPC families underwent comprehensive counseling by a geneticist and pancreatologist prior to the proposed screening. Participating IAR, IAR who discontinued screening and IAR who never participated in the screening program were invited to complete questionnaires to assess the motivation for participating in surveillance, cancer worries, structural distress and experiences with participation. Questionnaires were completed anonymously to receive most accurate answers.ResultsOf 286 IAR to whom pancreatic ductal adenocarcinoma (PDAC) screening was recommended, 139 (48.6%) IAR regularly participated (group 1), 49 (17.1%) IAR (group 2) discontinued screening after median 1 (1–10) screening visits and 98 (34.2%) IAR (group 3) never underwent screening. The overall response rate of questionnaires was 67% (189/286) with rates of 100% (139 of 139 IAR), 49% (29 of 49 IAR) and 23.4% (23 of 98 IAR) for groups 1, 2 and 3, respectively. At least 93% of IAR felt adequately informed about the screening program after initial counseling. However, only 38.8% received knowledge of or the recommendation for PDAC screening by physicians. The reported cancer-related distress and the fear of investigations were highest in group 1, but acceptably low in all three groups. The main reasons to discontinue or not to participate in screening were the time efforts and travel costs (groups 2 and 3 48,7%).ConclusionLess than 50% of IAR regularly participate in a proposed PDAC screening program, although the associated psychological burden is quite low. Physicians should be educated about high risk PDAC groups and screening recommendations. Time and travel efforts must be reduced to encourage more IAR to participate in a recommended screening.

中文翻译：

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德国家族性胰腺癌 (FaPaCa) 国家病例集 - 胰腺癌筛查计划的接受度和心理方面

背景建议对家族性胰腺癌 (FPC) 家族的高危人群 (IAR) 进行胰腺癌筛查，但对于此类筛查项目的接受程度知之甚少。因此，对受控 FPC 筛查计划的接受度和心理方面进行了评估。方法 FPC 家庭的 IAR 在提议的筛查之前接受了遗传学家和胰腺学家的全面咨询。参与的 IAR、停止筛查的 IAR 和从未参加过筛查计划的 IAR 被邀请完成问卷调查，以评估参与监测的动机、癌症担忧、结构性困扰和参与经验。问卷以匿名方式完成，以获得最准确的答案。结果 在推荐进行胰腺导管腺癌 (PDAC) 筛查的 286 位 IAR 中，139 位 (48.6%) 位 IAR 定期参加（第 1 组），49 位 (17.1%) 位 IAR（第 2 组）在中位 1 (1-10) 次筛查访问后停止筛查98 名（34.2%）IAR（第 3 组）从未接受过筛查。问卷的总体答复率为 67% (189/286)，第 1、2 和 3 组的答复率为 100%（139 份 IAR 中的 139 份）、49%（49 份中的 29 份）和 23.4%（98 份中的 23 份） ， 分别。在初步咨询后，至少 93% 的 IAR 感到充分了解筛查计划。然而，只有 38.8% 的人接受了医生对 PDAC 筛查的了解或建议。报告的与癌症相关的痛苦和对调查的恐惧在第 1 组中最高，但在所有三组中都处于可接受的低水平。中止或不参加筛查的主要原因是时间和旅行费用（第 2 组和第 3 组 48,7%）。结论 不到 50% 的 IAR 定期参加提议的 PDAC 筛查计划，尽管相关的心理负担是相当低。应该对医生进行有关高风险 PDAC 组和筛查建议的教育。必须减少时间和旅行工作，以鼓励更多的 IAR 参与推荐的筛查。