Evaluating Survivorship Experiences and Needs Among Rural African American Breast Cancer Survivors.

Disparities in cancer survivorship exist among specific populations of breast cancer survivors, specifically rural African American breast cancer survivors (AA-BCS). While effective survivorship interventions are available to address and improve quality of life, interventions must be culturally tailored for relevance to survivors. Here, we report the results of our formative research using focus groups and in-depth interview to better understand unique rural AA-BCS survivorship experiences and needs in the Alabama Black Belt. Surveys were used to gather sociodemographic and cancer treatment data. Fifteen rural AA-BCS shared their experiences and concerns about keeping their cancer a secret, lack of knowledge about survivorship, lingering symptoms, religion and spirituality, cancer surveillance, and general lack of survivorship education and support. Rural AA-BCS were unwilling to share their cancer diagnosis, preferring to keep it a secret to protect family and friends. Quality-of-life issues like lymphedema body image and sexuality were not well understood. They viewed spirituality and religion as essential in coping and accepting cancer. Participants also discussed the importance of and barriers to maintaining health through regular check-ups. They needed social support from family and friends and health care providers. Overall, rural AA-BCS expressed their need for knowledge about survivorship self-management by providing a vivid picture of the realities of cancer survival based on shared concerns for survivorship support and education within the context of culture.

A multi-modal intervention for Activating Patients at Risk for Osteoporosis (APROPOS): Rationale, design, and uptake of online study intervention material.

OBJECTIVE: To develop an innovative and effective educational intervention to inform patients about the need for osteoporosis treatment and to determine factors associated with its online uptake. METHODS: Postmenopausal women with a prior fracture and not currently using osteoporosis therapy were eligible to be included in the Activating Patients at Risk for OsteoPOroSis (APROPOS). Four nominal groups with a total of 18 racially/ethnically diverse women identified osteoporosis treatment barriers. We used the Information, Motivation, Behavior Skills conceptual model to develop a direct-to-patient intervention to mitigate potentially modifiable barriers to osteoporosis therapy. The intervention included videos tailored by participants' race/ethnicity and their survey responses: ranked barriers to osteoporosis treatment, deduced barriers to treatment, readiness to behavior change, and osteoporosis treatment history. Videos consisted of "storytelling" narratives, based on osteoporosis patient experiences and portrayed by actresses of patient-identified race/ethnicity. We also delivered personalized brief phone calls followed by an interactive voice-response phone messages aimed to promote uptake of the videos. RESULTS: To address the factors associated with online intervention uptake, we focused on participants assigned to the intervention arm (n = 1342). These participants were 92.9% Caucasian, with a mean (SD) age 74.9 (8.0) years and the majority (77.7%) had some college education. Preference for natural treatments was the barrier ranked #1 by most (n = 130; 27%), while concern about osteonecrosis of the jaw was the most frequently reported barrier (at any level; n = 322; 67%). Overall, 28.1% (n = 377) of participants in the intervention group accessed the videos online. After adjusting for relevant covariates, the participants who provided an email address had 6.07 (95% CI 4.53-8.14) higher adjusted odds of accessing their online videos compared to those who did not. CONCLUSION: We developed and implemented a novel tailored multi-modal intervention to improve initiation of osteoporosis therapy. An email address provided on the survey was the most important factor independently associated with accessing the intervention online. The design and uptake of this intervention may have implications for future studies in osteoporosis or other chronic diseases.