Development and testing of patient-centered education about hormone replacement therapy for women at high genetic risk of breast and ovarian cancer.

OBJECTIVE: In this study, we aimed to develop education to assist BRCA mutation carriers in making informed decisions about HRT in the context of risk-reducing surgery, while simultaneously clarifying their treatment-specific values and reducing decisional conflict. METHODS: We enrolled premenopausal BRCA mutation carriers ages 19-49 without prior cancer or risk-reducing salpingo-oophorectomy to structured interviews in which they reviewed education about the risks and benefits of HRT. Materials included literature-derived data demonstrating associations between HRT and commonly considered health outcomes (breast cancer, vasomotor symptoms, sexual functioning, cardiovascular disease, osteoporosis, and blood clots). Participants completed the 16-item Decisional Conflict Scale (DCS) before and after education, communicated their preferences by rating and ranking the six outcomes, and provided feedback to inform iterative revisions of the educational content. RESULTS: 25 participants completed interviews. DCS scores decreased significantly from 54.6 to 22.8 following education (p < 0.001); sub-scores for uncertainty (71.7 to 37.3), informed (71.7 to 15.3), values clarity (53.7 to 17.0), effective decision (44.2 to 25.5), and support (35.0 to 17.7) also decreased significantly. Participants ranked cardiovascular disease as the most important outcome to consider, followed by breast cancer, osteoporosis, blood clots, decline in sexual function, and hot flashes. Participants with prior mastectomy (N = 10) ranked breast cancer as the most important outcome 25% of the time, compared to 80% in participants without mastectomy (N = 15). CONCLUSION: Following education, BRCA mutation carriers had significantly less decisional conflict regarding the choice to use HRT. This pilot study was successful in generating a prototype educational aid for further testing.

What is a Good Death? A Choice Experiment on Care Indicators for Patients at End of Life.

CONTEXT: Health systems should aim to deliver on what matters most to patients. With respect to end of life (EOL) care, knowledge on patient preferences for care is currently lacking. OBJECTIVES: To quantify preference weights for key EOL care indicators. METHODS: We developed a discrete choice experiment survey with 13 key indicators related to patients' experience in the last six weeks of life. We fielded the survey to a web-panel of caregiver proxies for recently deceased care recipients. We obtained 250 responses in each of five countries: India, Singapore, Kenya, the UK and the US. Latent-class analysis was used to evaluate preference weights for each indicator within and across countries. RESULTS: A 2-class latent-class model was the best fit. Class 1 (average class probability = 64.7%) preference weights were logically ordered and highly significant, while Class 2 estimates were generally disordered, suggesting poor data quality. Class 1 results indicated health care providers' ability to control patients' pain to desired levels was most important (11.5%, 95% CI: 10.3%-12.6%), followed by clean, safe, and comfortable facilities (10.0%, 95% CI: 9.0%-11.0%); and kind and sympathetic health care providers (9.8%, 95% CI: 8.8%-10.9%). Providers' support for nonmedical concerns had the lowest preference weight (4.4%, 95% CI: 3.6%-5.3%). Differences in preference weights across countries were not statistically significant. CONCLUSION: Results reveal that not all aspects of EOL care are equally valued. Not accounting for these differences would lead to inappropriate conclusions on how best to improve EOL care.