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解读遗传性乳腺癌和卵巢癌患者在遗传咨询过程中的需求,为移动支持应用程序的开发提供信息:德国的一项定性研究

Deciphering the needs of patients with hereditary breast and ovarian Cancer in the Process of Genetic Counseling to Inform the Development of a Mobile Support App: a qualitative study in Germany.

作者信息

Ammon Nils, Reichert Chiara, Kupka Thomas, Oeltze-Jafra Steffen, Bergmann Anke Katharina, Schlegelberger Brigitte, Wolff Dominik, Vajen Beate

机构信息

Department of Human Genetics, Hannover Medical School, Hannover, Germany.

Peter L. Reichertz Institute for Medical Informatics of TU Braunschweig and Hannover Medical School, Hannover, Germany.

出版信息

J Community Genet. 2024 Dec;15(6):603-613. doi: 10.1007/s12687-024-00727-6. Epub 2024 Aug 19.

Abstract

Patients with hereditary breast and ovarian cancer (HBOC) are not only concerned about their own health but also about that of their children, grandchildren, and other relatives. Therefore, they have specific needs for information and support. During genetic counseling guidance is provided to HBOC patients and other individuals who may be at risk for familial cancer. The purpose of the study was to identify the needs of HBOC patients during the genetic counseling process that could be addressed by digital solutions. Nine semi-structured qualitative interviews were conducted. Overall, the patients appreciated the personal contact with human geneticists as an especially positive factor in the genetic counseling process. However, patients noted the following needs (1) support in the time following genetic counseling, (2) support before genetic counseling by collecting own and familial medical information, (3) Need for contact options to support services, (4) Need for patient-friendly medical information, (5) Wish for administration-related components in a support app. The results will inform the development of a patient-centered mobile support app.

摘要

遗传性乳腺癌和卵巢癌(HBOC)患者不仅关心自己的健康,还关心他们的子女、孙辈及其他亲属的健康。因此,他们对信息和支持有特定需求。在遗传咨询过程中,会为HBOC患者及其他可能有家族性癌症风险的个体提供指导。本研究的目的是确定在遗传咨询过程中HBOC患者可通过数字解决方案满足的需求。进行了九次半结构化定性访谈。总体而言,患者赞赏与人类遗传学家的个人接触是遗传咨询过程中一个特别积极的因素。然而,患者指出了以下需求:(1)遗传咨询后的支持;(2)在遗传咨询前通过收集自己和家族的医疗信息获得支持;(3)需要支持服务的联系选项;(4)需要患者友好型医疗信息;(5)希望支持应用程序中有与管理相关的组件。研究结果将为以患者为中心的移动支持应用程序的开发提供参考。

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[Genetic counseling in Germany: development of demand].[德国的遗传咨询:需求的发展]
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2020 Sep;63(9):1161-1167. doi: 10.1007/s00103-020-03206-8.

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