ArticleCancer control : journal of the Moffitt Cancer Center
Evaluating A Patient-Led Health Literacy Program for People Living With Metastatic Breast Cancer.
Article in Cancer control : journal of the Moffitt Cancer Center. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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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.
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