Abstract A33: Engaging stakeholders to improve quality of life in Latina breast cancer survivors and their caregivers: Lessons learned from a community-based organization
Authors: Darling Margaret LG , Elliott Maria Gloria , Campos Claudia , Graves Kristi D. 
Published: May 2015

Abstract
Purpose: In the United States, the lifetime risk for cancer among women of Latino origin is 1 in 3. Evidence indicates that Latina breast cancer survivors have lower quality of life (QOL) compared to non-Latina survivors. Similarly, research demonstrates that Latino caregivers experience increased distress and physical symptoms compared to age- and gender-matched controls. Nueva Vida, a community-based organization (CBO) that supports Latinos and Latinas with cancer and their families, designed a multidimensional intervention for Latina breast cancer survivors and their caregivers that is uniquely formatted to reflect the cultural preferences and values of Latina survivors and their spouses. The unique format involves twice monthly sessions in which survivors and caregivers arrive together, separate into survivor and caregiver groups, and discuss collectively at the end of the session. Observations in the literature indicate a critical need for evaluation of patient-caregiver interventions (PCIs) to improve QOL in underserved groups. Funded by the Patient-Centered Outcomes Research Institute, the purpose of this project is to determine whether the PCI improves QOL, communication, and satisfaction with care more than usual care among Latina breast cancer patients and their caregivers.
Procedures: In addition to the dyadic component of the PCI, the project is guided by two conceptual models: the Contextual Model of Health-Related QOL, which specifies individual, cultural and contextual influences as important determinants of QOL; and Social Cognitive Theory, which focuses on confidence in ability to engage in communication and coping as a survivor or caregiver. Latina breast cancer survivors will be eligible for the study if they self-identify as Latina, speak English or Spanish, and can identify at least one primary, adult caregiver that speaks English or Spanish. Interventionists at four CBOs with distinct geographic and ethnic populations will receive training on implementing the PCI using psychosocial interventions with Latina breast cancer patients. Participants complete telephone interviews prior to the PCI, immediately after, and six months later. Interviews are conducted using the Patient-Reported Outcomes Measurement Information System (PROMIS), a rigorously tested instrument tailored to an individual's current level on a particular domain, which will allow us to compare our findings to other cancer and non-cancer cohorts and more precisely estimate QOL outcomes.
Unpublished data: This study is innovative in the inclusion of an socioeconomically diverse population of cancer survivors and their caregivers. This study is the first evaluation of a cancer PCI developed by a Latina survivor based on empirical and theoretical evidence. Survivors and caregivers who attend Nueva Vida's PCI reported positive changes in: family life (93%), relationship with one another (50%), work (72%), feeling better with self (100%), activity (93%), and their spiritual life (100%). This study will assess the impact of the inclusion of a caregiver as a part of care across geographic and socioeconomic groups. In addition, through a review of organizational records, Nueva Vida identified significant steps CBOs can take to engage in community-based participatory research.
Conclusions: If successful the intervention will improve outcomes for Latina survivors and caregivers. The potential impact of our intervention is large: we can quickly share results through outreach to 150+ local and national groups that provide care and support to thousands of Latino families facing cancer. It will also indicate the distinct impacts the patient-caregiver intervention has with different socioeconomic groups.
Citation Format: Margaret LG Darling, Maria Gloria Elliott, Claudia Campos, Kristi D. Graves. Engaging stakeholders to improve quality of life in Latina breast cancer survivors and their caregivers: Lessons learned from a community-based organization. [abstract]. In: Proceedings of the Sixth AACR Conference: The Science of Cancer Health Disparities; Dec 6–9, 2013; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2014;23(11 Suppl):Abstract nr A33. doi:10.1158/1538-7755.DISP13-A33