研究动态
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乳腺癌保健专业人员提供的基因检测前咨询对患者的体验:一项大规模前瞻性多中心研究结果。

Patients' experiences with pre-test genetic counseling provided by breast cancer healthcare professionals: Results from a large prospective multicenter study.

发表日期:2023 Mar 29
作者: K Bokkers, E M A Bleiker, M E Velthuizen, R Koelemij, J P J Burgmans, J H Klinkenbijl, A P Schouten van der Velden, N Vermulst, B F Huizinga, A J Witkamp, T Frakking, R M Brohet, C M Aalfs, W Koole, E J P Schoenmaeckers, M G E M Ausems
来源: BREAST

摘要:

乳腺癌患者的基因测试前辅导服务日益由非遗传医疗专业人员提供。本研究旨在评估由外科医生或护士等非遗传医疗专业人员提供的乳腺癌患者的基因测试前辅导服务体验。我们邀请从其外科医生或护士处接受基因测试前辅导服务的乳腺癌患者(主流组)和从临床遗传学家处接受基因测试前辅导服务的患者(常规护理组)参加我们的多中心研究。在2019年9月至2021年12月间,患者在接受基因测试前(T0)和收到测试结果后四周(T1)接受问卷调查,以评估心理社会结果、知识、讨论的话题和满意度。我们在主流组和常规护理组分别包括了191名和183名患者,并分别收到了159份和145份随访问卷。两组患者的困扰水平和决策后悔程度相当。主流组的决策冲突程度更高(p = 0.01),但仅有7%存在临床相关的决策冲突(相比之下,常规护理组仅有2%)。在主流组中,有关基因测试对(副)乳腺或卵巢癌风险的可能影响很少被讨论(p = 0.03和p = 0.000,分别)。在两组中,关于遗传学的知识相当,满意度高,并且大多数患者都更喜欢口头和书面同意进行基因测试。主流化的基因测试辅助护理为大多数乳腺癌患者提供了足够的信息,以便在最小程度上感到困扰地做出基因测试的决策。Copyright © 2023 The Authors. Published by Elsevier Ltd.. All rights reserved.
Pre-test genetic counseling of patients with breast cancer is increasingly being offered by non-genetic healthcare professionals. We aimed to evaluate the experiences of patients with breast cancer receiving pre-test genetic counseling from a non-genetic healthcare professional (i.e., surgeon or nurse).Patients who were diagnosed with breast cancer and received pre-test counseling from their surgeon or nurse (mainstream group), and patients who received pre-test counseling from a clinical geneticist (usual care group) were invited to participate in our multicenter study. Between September 2019 and December 2021, patients received a questionnaire after pre-test counseling (T0) and four weeks after receiving their test results (T1) to evaluate psychosocial outcomes, knowledge, discussed topics and satisfaction.We included 191 patients in our mainstream and 183 patients in our usual care group and received, respectively 159 and 145 follow-up questionnaires. Levels of distress and decisional regret were comparable in both groups. Decisional conflict was higher in our mainstream group (p = 0.01), but only 7% had clinically relevant decisional conflict (vs 2% in usual care group). The possible implications of a genetic test on (secondary) breast or ovarian cancer risks were less frequently discussed in our mainstream group (p = 0.03 and p = 0.000, respectively). In both groups knowledge about genetics was comparable, satisfaction was high and the majority of patients in both groups preferred to give both verbal and written consent for genetic testing.Mainstreamed genetic care provides sufficient information for the majority of breast cancer patients to decide about genetic testing with minimal distress.Copyright © 2023 The Authors. Published by Elsevier Ltd.. All rights reserved.