Latina Breast Cancer Survivors...Our Experience

Institution: University of California, Los Angeles
Investigator(s): Diana Tisnado, M.P.A., Ph.D. - Brian Montano, MPH -
Award Cycle: 2008 (Cycle 14) Grant #: 14AB-2000 Award: $165,834
Award Type: CRC Pilot Award
Research Priorities
Community Impact of Breast Cancer>Sociocultural, Behavioral, and Psychological Issues: the human side



Initial Award Abstract (2008)

“Survivorship” (the phase of care following primary treatment) is a distinct and important phase of the cancer experience, but it has been relatively neglected in education, clinical practice, and research. The Institute of Medicine report “From Cancer Patient to Cancer Survivor: Lost in Transition,” recommends that survivorship care should include: 1) prevention of recurrence, new cancer and late effects of cancer treatment; 2) monitoring or surveillance for cancer and medical, mood, and social issues; 3) interventions for the effects of cancer and its treatment; and 4) coordination among specialists and primary care providers to ensure all health needs are met.

Little is known about adherence to best practices in survivorship care. Research is urgently needed to understand the patterns of delivery of survivorship care and to identify areas in need of intervention, particularly for populations at risk of disparities in cancer treatment and outcomes such as Latinas. We now propose a Community Research Collaboration Pilot Project to examine issues of breast cancer survivorship care among Latinas in Los Angeles County.

The goal of the proposed project is to increase understanding of Latina breast cancer patient experiences and attitudes regarding medical care and other pertinent services following completion of primary breast cancer treatment. Specifically, we will address the following specific aims:

We propose to conduct focus groups with Latina breast cancer survivors to explore their knowledge, attitudes, beliefs, and experiences with breast cancer care after completion of primary treatment, perceived barriers and facilitators to receipt of care; personal characteristics such as demographics, financial, social, and cultural barriers or resources, health care system structure, and other issues of significance identified by the participating women. Focus groups will be comprised of Latina survivors who have completed primary breast cancer treatments. Women who have received their first breast cancer diagnosis between one and five years prior to the study period, who are English or Spanish-speaking, and who feel well enough to participate will be eligible.

Few studies have addressed the quality of medical care after completion of primary treatment of breast cancer. Despite documentation of disparities in screening rates, stage at diagnosis, treatments, and shorter survival time by race and ethnicity, no studies of which we are aware have specifically addressed Latina breast cancer survivors’ knowledge, attitudes, beliefs, or experiences and needs in terms of planning for and accessing medical care for surveillance, monitoring and management of cancer (morbid) and non-cancer (co-morbid) medical issues.

The Latino community will have strong representation through the Latina Task Force (LTF) membership, who will be involved throughout all phases of the project. These dedicated professionals represent a full spectrum of organizations involved in improving the health status of the local Latino community, including private and public advocacy, health education, primary and tertiary care, support groups, survivors. We plan to work with the LTF to disseminate results of the study through a number of mechanisms with excellent potential to reach different audiences of interest, including Latinas in Los Angeles County, health care providers, and community partners.

This research will lay the foundation for the next phase of work: to develop and assess the acceptability of an intervention to address needs of Latina breast cancer survivors to be implemented by Partnered for Progress and/or the Latina Task Force. We plan to build on this work with other racial/ethnic groups at risk for being underserved. This research will enhance our understanding of the issues that impact the quality of breast cancer care that women receive, and to inform strategies to improve the quality of breast cancer survivorship care available to all women.




Final Report (2010)

“Survivorship” (the phrase of care following primary treatment) is a distinct and important phase of the cancer experience, but it has been relatively neglected in education, clinical practice, and research. Little is known about adherence to best practices in survivorship care. Research is needed to understand the patterns of delivery of survivorship care and to identify areas in need o intervention, particularly for populations at risk for disparities such as Latinas.

Our Community Research Collaboration Pilot Project examined issues of breast cancer survivorship care among Latinas in Los Angeles County. The aims of the project were to increase our understanding of Latina breast cancer patients’ experiences and attitudes regarding medical care and other pertinent service following completion of primary breast cancer treatment; and to enhance our understanding of how Latinas conceptualized being breast cancer survivors. We used focus groups to explore the Latinas’ experiences of survivorship care; examine their knowledge, attitudes and beliefs regarding survivorship care for breast cancer after completion of initial treatment; explore the range of experiences and major barriers to appropriate follow-up care; and explore how Latinas conceptualized being breast cancer survivors. The Partnered for Progress (PFP) Latina Task Force membership represents the full spectrum of organizations involved in improving the health status of the local Latino community, including private and public advocacy, health education, medical care, support groups, and survivors. This coalition or task force has worked closely with the community and academic research partners to develop culturally and linguistically appropriate study materials and recruitment plans, and to provide input regarding qualitative data analysis and interpretation. The research protocol was approved by the UCLA Institutional Review Board.

We successfully overcame initial challenges and recruited 74 Latina breast cancer survivors through Wellness Community events, health fairs, the PFP newsletter, promotoras, support groups and hospitals. Six English and six Spanish language focus groups were completed. Participants ranged from 30-75 years of age, Stage I to IV. Issues identified in analysis included: confusion over survivorship care plans and concerns over quality of care; health insurance coverage such as being uninsured or underinsured, loss of coverage due to inability to work, emergency MediCal time limits, and limited provider choices; sources of support include family, personal faith, faith communities cancer support groups, and activation for self-care; and challenges such as fatigue, depression, cognitive after-effects of treatment, and stresses on children, marriage, and extended family. Participant recommendations included support services for family members and caregivers. This research is laying the foundation for the next phase of work: to develop and assess an intervention to address needs of Latina breast cancer survivors.

Publications:
Perceptions of Survivorship Care among Latina Women with Breast Cancer in Los Angeles County




Symposium Abstract (2010)

Diana Tisnado*, Brian Montaño**, Jenifer Metz**, Carolyn Mendez-Luck***

* University of California, Los Angeles Division of General Internal Medicine and Health Services Research
**Partnered for Progress
***University of California, Los Angeles Department of Community Health Sciences

Introduction: A breast cancer diagnosis and its treatment is a major life challenge, with an impact on the woman herself and everyone who cares for her. Research is urgently needed to understand the patterns of survivorship care and to identify areas in need of intervention, particularly for populations known to be at risk of disparities in cancer treatment and outcomes such as ethnic minorities. Partnered for Progress Latina Task Force and staff have partnered with academic researchers to conduct the study. The aims of this study are to examine experiences of access to and quality of care in Latinas with breast cancer entering the survivorship phase of care; barriers and facilitators of receiving high quality survivorship care; and to learn how Latinas conceptualize and experience being a breast cancer survivor.

Methods: This work is using a qualitative approach with semi-structured focus group discussions with Latinas between 6 months and 10 years post-breast cancer diagnosis. Participants were recruited through health events, Promotoras, the PFP newsletter, flyers at hospitals, and support groups. To date we have reached our goal of 12 focus groups. Over 70 Latinasurvivors participated, 56% in Spanish and the rest in English. Participant ages ranged from 30-75 years, and breast cancer stage varied from Stage I to Stage IV.

Results: Qualitative analyses are in progress and include input from all study partners. Recurring issues emerging in preliminary analyses include: confusion over survivorship care plans and concerns over quality of care; issues of health insurance coverage such as being uninsured or underinsured, loss of coverage due to inability to work, and limited  choices within many health plans; sources of support including family, faith/spirituality, cancer support groups, and activation for self-care; and challenges such as anxiety, fatigue, depression, cognitive after-effects of treatment, and perceived stresses on children, marriage, and extended family.

Conclusion: The results of this pilot study will provide invaluable information regarding needs in the community, which will be used to design and assess the acceptability of one or more interventions to help Latinas and other women with breast cancer. We expect this work to result in identification of factors that will inform intervention development, peer reviewed manuscripts and community reports addressing descriptions of Latinas’ experiences with care, and future grant proposals for research evaluating culturally and linguistically appropriate interventions.