Financial constraints on genetic counseling and further risk‐management decisions among U.S. women at elevated breast cancer risk

Abstract

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.

Predicting breast cancer risk in a racially diverse, community‐based sample of potentially high‐risk women

“…Enhanced surveillance methods can substantially improve early detection of breast cancer when treatment is most effective; prophylactic surgeries and medication can reduce breast cancer risk by 40%–95% 1,4 . Yet, these options are substantially underused due to lack of systematic risk screening and support in cancer risk‐management decision‐making in the United States 3,5–7 …”

“…1,4 Yet, these options are substantially underused due to lack of systematic risk screening and support in cancer risk-management decision-making in the United States. 3,[5][6][7] Numerous breast cancer risk prediction models have been developed. 8,9 In the United States, the Gail, Claus, and IBIS (i.e., Tyrer-Cuzick) models are commonly used in research and clinical practice.…”

“… 1 , 4 Yet, these options are substantially underused due to lack of systematic risk screening and support in cancer risk‐management decision‐making in the United States. 3 , 5 , 6 , 7 …”

Pricing transparency among several needs for patients with high‐risk breast cancer

“…According to a recent study published in the Journal of Genetic Counseling , barriers to care for women with a high risk of breast cancer include a multitude of cost‐associated factors, even when those patients are covered by health insurance 1 . The findings illustrate a critical need for health care pricing transparency to detect and treat cancer early.…”

“…Qualitative interviews were conducted with 50 female patients to assess various aspects of financial constraints, including a lack of medical insurance, underinsurance, and other miscellaneous factors such as the management of comorbidities and medical debt. Several characteristics were examined, including age, race (60% White and 40% Black), breast cancer risk, income and education levels, health insurance and employment status, marital status, and number of household members 1 . Researchers found that financial considerations were complex in patients' management of elevated risk.…”