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BRACAVENIR: an observational study of expectations and coping in young women with high hereditary risk of breast and ovarian cancer
Hereditary Cancer in Clinical Practice ( IF 1.7 ) Pub Date : 2019-02-27 , DOI: 10.1186/s13053-019-0107-7
Fabrice Kwiatkowski 1 , Mathilde Gay-Bellile 1 , Pascal Dessenne 1 , Claire Laquet 1 , Véronique Boussion 2 , Marie Béguinot 3 , Marie-Françoise Petit 1 , Anne-Sophie Grémeau 4 , Céline Verlet 5 , Charlotte Chaptal 5 , Marilyn Broult 6 , Sylvie Jouvency 6 , Martine Duclos 7 , Yves-Jean Bignon 1
Affiliation  

BackgroundIn families with high risk of hereditary breast/ovarian cancer (HBOC), women before age 30 do not yet undergo clinical screening, but they are exposed to contradictory information from diverse sources. They may be presented with surgical prevention options at a key moment of their identity construction, the start of a marital relationship and/or at the onset of procreation projects. We tested an original psychoeducational intervention to help these women better cope with these difficult issues.MethodsSeven young female counselees (26.4 ± 2.9 years [23–30]) from the Oncogenetics Department at Jean Perrin Comprehensive Cancer Center were enrolled. A weekend group workshop composed of short conferences, group sharing and role playing activities was supervised by a psychotherapist. A longitudinal analysis of questionnaires over one year of follow-up was performed. The Herth Hope Inventory was evaluated, as well as self-esteem, anxiety, perceived control, coping, and quality of life. Participants’ comments were collected by a genetic counselor throughout the workshop.ResultsAll participants were BRCA mutation carriers and six had lived with a close relative affected by breast/ovarian cancer. Hope, self-esteem and quality of life increased during the year after the workshop (p = 0.0003). Coping by focus on the problem increased in the first 6 months (p = 0.011) and returned to baseline values at one year, while coping by focus on emotions decreased steadily (p = 0.021). Debriefing from the workshop highlighted the new medical opportunities proposed and the challenges these young women face, such as whether to have prophylactic surgery, and if so before or after having children, and how surgery might affect their relationship with their partner.ConclusionA tailored two-day psychoeducational workshop may be sufficient to improve the way young women with BRCA mutations deal with the implications of HBOC risk.Trial registrationBRACAVENIR was registered in ClinicalTrials.gov with no NCT02705924.

中文翻译:

BRACAVENIR:对患有乳腺癌和卵巢癌高遗传风险的年轻女性的期望和应对的观察性研究

背景在遗传性乳腺癌/卵巢癌 (HBOC) 高风险家庭中,30 岁之前的女性尚未接受临床筛查,但她们会接触到来自不同来源的相互矛盾的信息。在他们的身份构建、婚姻关系开始和/或生育项目开始的关键时刻,他们可能会接受手术预防选择。我们测试了一种原始的心理教育干预措施,以帮助这些女性更好地应对这些困难问题。方法招募了来自 Jean Perrin 综合癌症中心肿瘤遗传学部门的七名年轻女性辅导员(26.4 ± 2.9 岁 [23-30])。由心理治疗师监督的周末小组研讨会由短期会议、小组分享和角色扮演活动组成。对超过一年的随访问卷进行纵向分析。评估了 Herth Hope 量表,以及自尊、焦虑、感知控制、应对和生活质量。在整个研讨会期间,遗传咨询师收集了参与者的意见。结果所有参与者都是 BRCA 突变携带者,其中六人与患有乳腺癌/卵巢癌的近亲生活在一起。研讨会结束后的一年里,希望、自尊和生活质量有所提高(p = 0.0003)。在前 6 个月内,专注于问题的应对有所增加(p = 0.011),并在一年后恢复到基线值,而专注于情绪的应对则稳步下降(p = 0.021)。研讨会的汇报强调了提出的新医疗机会和这些年轻女性面临的挑战,
更新日期:2019-02-27
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