Abstract
Introduction: Most patient decision aids rely heavily on written information and require patients to have above average literacy skills, a potential barrier for the medically underserved. Individuals with limited literacy are restricted in their ability to make appropriate health decisions and to act on health information. We developed and evaluated the “A Patchwork of Life” (PLife) patient decision aid to assist medically underserved women with limited literacy in making a breast cancer treatment decision. The PLife is computer-based, culturally and linguistically appropriate learning environment that involves two key components, soap opera segments and related learning modules designed to support breast cancer (Stages I-IIIA) surgery decision-making and to encourage communication about treatment decision with their provider, relatives and friends. The objectives of the project were to: 1) determine the effectiveness of PLife in assisting patients make informed breast cancer treatment decisions, and; 2) evaluate patients’ perceptions of the usefulness of the intervention for aiding in their decision-making.
Experimental Procedures: The study was a randomized controlled trial including an intervention and control group. The intervention group viewed the PLife program and the control group received usual care including additional breast cancer educational material provided by the National Cancer Institute (NCI). Both groups consisted of patients who were candidates for lumpectomy or mastectomy.
Patients were identified through pathology and other medical records and physician referrals. Those who consented completed all baseline assessments before implementation of the PLife decision aid. A Patient Navigator arranged for a convenient time for the patient to view the program.
Immediately after viewing the program, patients answered a questionnaire rating the program. Follow-up data collection with patients took place via phone 2-weeks after viewing the program. At 2-week, and 6-month follow up patients answered questions about breast cancer knowledge, decisional conflict, and treatment preferences. Questionnaires were administered in Spanish and English.
Summary of Data: A total of 100 patients diagnosed with Stage I-IIIA breast cancer were randomized to either a control (n = 49) or intervention group (n = 51). Median age of the sample was 49 ± 11.6 years, 15% were Non-Hispanic White, 56% African American, and 49% Hispanic. The majority of patients chose mastectomy over lumpectomy, regardless of study group assignment (60.8% intervention vs 53.1% control). Intervention group exhibited greater improvement in breast cancer knowledge compared to control group (60.5% vs 37.7%, respectively). At six month follow-up, patients who viewed the PLife program felt more informed about their treatment options, risks and benefits (p = 0.01), and showed significant improvement in decision certainty about breast cancer treatment (p = 0.01) compared to control group. Usability analysis revealed a high level of user satisfaction with the PLife program.
Conclusions: Results suggest that the PLife program improved patients’ knowledge about breast cancer. Additionally, patients who interacted with the PLife program exhibited an overall greater treatment decision certainty compared to usual care group. Taken together, these findings suggest, that the PLife program is a suitable strategy to help medically underserved women with breast cancer maximize their understanding of the implications of breast cancer treatment options.
Citation Information: Cancer Epidemiol Biomarkers Prev 2011;20(10 Suppl):A31.
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