Division of Epidemiology, College of Public Health, The Ohio State University, Columbus, OH, USA.
Center for Outcomes Research, JPS Health Network, Fort Worth, TX, USA.
J Genet Couns. 2021 Oct;30(5):1452-1467. doi: 10.1002/jgc4.1413. Epub 2021 Mar 21.
Clinical guidelines recommend that women at high risk of breast cancer should consider various risk-management options, which remain widely underutilized. We conducted semi-structured, qualitative interviews with 50 high-risk women to understand how financial constraints affect use of genetic counseling, genetic testing, and further risk-management decisions. Inductive analyses revealed three categories of health-related financial constraint: (a) lack of insurance, (b) underinsurance, and (c) other financial constraints (e.g., medical debt, raising children, managing comorbidities). Various breast cancer risk-management actions were limited by these financial constraints, including genetic counseling, genetic testing, enhanced screening, and prophylactic surgeries. Women's narratives also identified complex relationships between financial constraint and perceptions of healthcare providers and insurance companies, particularly as related to bias, price transparency, and potential genetic discrimination. Results from this study have implications for further research and expansion of genetic counseling services delivery to more economically and racially diverse women.
临床指南建议乳腺癌高危女性应考虑各种风险管理选择，但这些选择仍未得到广泛应用。我们对 50 名高危女性进行了半结构化、定性访谈，以了解经济限制如何影响遗传咨询、基因检测和进一步的风险管理决策的使用。归纳分析揭示了三类与健康相关的经济限制：（a）缺乏保险，（b）保险不足，以及（c）其他经济限制（例如，医疗债务、抚养孩子、管理合并症）。这些经济限制限制了各种乳腺癌风险管理措施的实施，包括遗传咨询、基因检测、强化筛查和预防性手术。女性的叙述还确定了经济限制与对医疗保健提供者和保险公司的看法之间的复杂关系，特别是与偏见、价格透明度和潜在的基因歧视有关。这项研究的结果对进一步的研究和扩大遗传咨询服务的提供具有重要意义，以覆盖更多经济和种族多样化的女性。
