Evaluating A Patient-Led Health Literacy Program for People Living With Metastatic Breast Cancer.

Abstract

IntroductionLow cancer health literacy undermines patients' ability to interpret complex information and participate in shared decision making, and is associated with worse outcomes. Evidence for effective health literacy interventions in metastatic breast cancer (MBC) remains limited. We evaluated a patient-led, virtual health literacy program designed to strengthen MBC-specific knowledge and self-efficacy.MethodsWe conducted a mixed-methods, pre-post evaluation across two program iterations (Fall 2023; Spring 2024) delivered by a national, patient-led-MBC organization, Project Life. The five-week synchronous course called Spinning Science covered breast cancer subtyping, genetic/genomic testing, clinical trials, circulating tumor DNA, and information literacy, with small-group activities and polling. Program participants were adults living with MBC. De-identified pre/post surveys assessed (1) self-efficacy for engaging in health decisions, and (2) knowledge using items adapted from the Cancer Health Literacy Test aligned to course content. Paired two-sample t-tests examined pre-post changes (α=0.05). Open-ended responses were analyzed thematically.ResultsFifty-four people with MBC were enrolled (cohort 1, n=17; cohort 2, n=37); 46 provided matched pre- and post-surveys (14 and 32, respectively). Agreement with "I don't know enough to make my own medical decisions" declined from 43% pre to 13% post (p<0.05), indicating improved self-efficacy. Baseline knowledge scores were high, and knowledge item gains were not statistically significant, consistent with ceiling effects. Post-program items showed >80% agreement for increased confidence in self-advocacy, improved health literacy, and sense of community. Qualitative feedback highlighted strengths like digestible content, approachable patient facilitators and flexible scheduling, as well as priorities for refinement such as continued access to materials, and more MBC-specific and numeracy content.ConclusionsA patient-developed, virtual health literacy program for people living with MBC showed meaningful improvements in self-efficacy, with actionable, participant-driven refinements between cohorts. This model offers a practical, scalable pathway for advancing self-efficacy within and beyond MBC. People living with metastatic breast cancer (MBC) face complex choices about tests and treatments. We evaluated a five‑week, patient‑led online program created by Project Life by and for people with MBC to build practical health knowledge and confidence for decision‑making. The Spinning Science course covered tumor subtypes, genetic and genomic testing, clinical trials, circulating tumor DNA, and how to find and judge trustworthy information. The program used short talks, small‑group discussions, live Q&A, and polls to keep the material clear and actionable. Across two offerings (Fall 2023 and Spring 2024), 54 people enrolled and 46 completed both “before” and “after” surveys; the share who agreed with “I don’t know enough to make my own medical decisions” dropped from 43% to 13%, showing a meaningful gain in decision self‑efficacy. Because many participants began with high knowledge, we did not observe changes in pre- and post- health literacy. However, more than 80% of respondents reported increased confidence in self‑advocacy, improved health literacy, and a stronger sense of community by the end of the program. Participants praised approachable facilitators, digestible content, and flexible scheduling, and they asked for continued access to materials, a glossary, and more MBC‑specific and numeracy content (for example, help interpreting statistics and lab results). This evaluation has limits: participants were highly educated and familiar with MBC, we did not collect detailed demographics, and experience with MBC varied widely. These factors that can affect changes in knowledge and make it challenging to assess true program impact and equity. Overall, this patient-developed online synchronous MBC health literacy intervention improved confidence in health decisions for this cohort of individuals with MBC.