Gaps in care, support, and research among diverse patients with early onset cancers

In this study, researchers explored the unique challenges faced by Black/African American (B/AA) and Hispanic/Latine (H/L) women diagnosed with early onset cancers (EOC), which occur between ages 18 and 49. The aim was to understand their experiences and identify gaps in care, support, and research, especially since these groups have received limited attention in research literature.

Early onset cancers are increasing, posing significant challenges for younger adults who may face additional burdens such as financial strain, caregiving, and social isolation. B/AA and H/L women are diagnosed at higher rates and have lower survival rates compared to their peers. Understanding their unique needs is crucial for developing targeted interventions that can improve care and support for B/AA and H/L women with early onset cancer.

The researchers conducted a qualitative study involving 14 women with EOC, recruited from a Northeastern US academic health system. Participants, aged 28 to 49, had breast, gastrointestinal, ovarian, or both breast and gastrointestinal cancers. The study involved individual interviews and focus groups conducted in English and/or Spanish. The interviews were recorded, transcribed, and analyzed to identify key themes and challenges.

The study revealed challenges across six psychosocial domains, including the impact of cancer on personal life, access to information, communication difficulties, balancing care with life responsibilities, the impact on family, and financial stress. Unique challenges for B/AA and H/L women included barriers in clinical care, support needs, and the applicability of existing research. Language barriers, differences in communication and information needs, and a lack of tailored information contributed to these challenges.

The findings highlight the need for personalized interventions tailored to the needs of B/AA and H/L women with EOC. The study suggests developing a digital support tool with reliable resources tailored to B/AA and H/L women with EOC to enhance patient engagement and address psychosocial support needs. These insights can guide the creation of programs that address the range of needs among patients with EOC.

Future research should focus on expanding participant recruitment to uncover additional themes. The study also suggests implementing tailored recruitment strategies for men and exploring the development of personalized digital support tools for patients with EOC.

This research was supported by a Yale Cancer Center Pilot Grant and the Rapid Case Ascertainment Shared Resource of the Yale Cancer Center, funded through the National Cancer Institute Cancer Center Support Grant (P30CA016359). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. Additionally, the research received support from a gift from Bakes for Breast Cancer. Yale University also provided funding and support for this research.