High Satisfaction and Low Distress in Breast Cancer Patients One Year after BRCA-Mutation Testing without Prior Face-to-Face Genetic Counseling

High Satisfaction and Low Distress in Breast Cancer Patients One Year after BRCA-Mutation Testing without Prior Face-to-Face Genetic Counseling
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DOI:
10.1007/s10897-015-9899-4
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发表时间:
2016-06-01
影响因子:
1.9
通讯作者:
Hoogerbrugge, Nicoline
Hoogerbrugge, Nicoline
中科院分区:
医学4区
文献类型:
--
作者:
Sie, Aisha S.;Spruijt, Liesbeth;Hoogerbrugge, Nicoline

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根据转诊到临床遗传学的标准做法,许多国家的大多数高危乳腺癌(BC)患者在进行brca突变检测(dna摄入量)之前接受面对面的遗传咨询。我们通过前瞻性研究评估了一种新的形式:用电话、书面和数字信息发送回家来取代摄入咨询。面对面咨询之后进行brca突变检测(dna直接检测)。在brca结果披露一年后,108名参与者返回了长期随访问卷,其中59名(55%)先前选择了dna直接(干预)而不是dna摄入(标准做法,即对照组:45%)。问卷评估满意度和心理困扰。所有参与者都满意,85%的dna直接参与者会再次选择该程序;10%的人更喜欢dna摄入,5%的人尚未决定。在重复测量方差分析中,在所有时间测量中,dna直接测量的一般痛苦(GHQ-12, p = 0.01)和bc特异性痛苦(ees -bc, p = 0.03)低于dna摄入。遗传特异性痛苦(IES-her)在两组之间没有显著差异。多变量回归分析显示,手术方式的选择对一般或遗传特异性痛苦均无显著影响。BC特异性痛苦(在BC诊断后)确实有助于一般和遗传特异性痛苦。这表明较高的痛苦得分反映了BC经历,而不是遗传诊断程序的类型。总之,绝大多数使用DNA-direct的BC患者在短期和基因检测结束后1年内都报告了高满意度,没有增加痛苦。
According to standard practice following referral to clinical genetics, most high risk breast cancer (BC) patients in many countries receive face-to-face genetic counseling prior to BRCA-mutation testing (DNA-intake). We evaluated a novel format by prospective study: replacing the intake consultation with telephone, written and digital information sent home. Face-to-face counseling then followed BRCA-mutation testing (DNA-direct). One year after BRCA-result disclosure, 108 participants returned long-term follow-up questionnaires, of whom 59 (55 %) had previously chosen DNA-direct (intervention) versus DNA-intake (standard practice i.e., control: 45 %). Questionnaires assessed satisfaction and psychological distress. All participants were satisfied and 85 % of DNA-direct participants would choose this procedure again; 10 % would prefer DNA-intake and 5 % were undecided. In repeated measurements ANOVA, general distress (GHQ-12, p = 0.01) and BC-specific distress (IES-bc, p = 0.03) were lower in DNA-direct than DNA-intake at all time measurements. Heredity-specific distress (IES-her) did not differ significantly between groups. Multivariate regression analyses showed that choice of procedure did not significantly contribute to either general or heredity-specific distress. BC-specific distress (after BC diagnosis) did contribute to both general and heredity-specific distress. This suggests that higher distress scores reflected BC experience, rather than the type of genetic diagnostic procedure. In conclusion, the large majority of BC patients that used DNA-direct reported high satisfaction without increased distress both in the short term, and 1 year after conclusion of genetic testing.