Meeting the self-care needs of Latinas after breast cancer
|Institution:||University of California, San Francisco|
Carmen Ortiz , Ph.D. -
Anna Napoles , PhD, MPH -
|Award Cycle:||2013 (Cycle 19)||Grant #: 19AB-2500||Award: $191,431|
|Award Type:||CRC Pilot Award|
|Community Impact of Breast Cancer>Sociocultural, Behavioral, and Psychological Issues: the human side|
Initial Award Abstract (2013)
Introduction: The end of active treatment is often a difficult transition for breast cancer survivors (BCS) filled with fears of recurrence and uncertainty about the future. This difficult transition occurs at the same time that BCS lose the regular support of their treatment team. After treatment, Spanish-speaking Latina breast cancer survivors (SSBCS) suffer worse quality of life (QoL) and more pain, depression, fatigue, and concerns about work, finances, and health insurance compared to whites. SSBCS lack culturally and linguistically appropriate information on recommended health care and self-care following active cancer treatment (e.g., management of increased risks of subsequent cancer and treatment side effects) and skills to manage their symptoms after treatment. We need to better understand the issues faced by SSBCS during this challenging survivorship phase and identify the most appropriate and effective programs to help them manage their symptoms and health after treatment.
Question(s) or hypotheses: Our research questions are: 1) From the perspectives of varied stakeholders (survivors, oncology providers, and advocates), what are the most pressing emotional and self-care needs of SSBCS once active treatment has ended? and 2) How appropriate are post-treatment breast cancer support programs that have been tested in White and African American BCS for use among SSBCS? This study will build on prior CBCRP CRC Pilot and Full Awards in which Drs. Nápoles and Ortíz developed and are testing in a randomized controlled trial (RCT) a program called Nuevo Amanecer (A New Dawn), a manualized 8-week stress management intervention for SSBCS women just diagnosed with breast cancer.
AIM 1: Identify the most important informational, emotional, and symptom management needs once active treatment has ended through a cross-sectional survey of a five-county community sample of SSBCS from our Nuevo Amanecer RCT (N˜100).
AIM 2: Identify the content and delivery format for self-care information and skills training to SSBCS following active treatment through 4 focus groups with SSBCS and in-person interviews with 10 SSBCS and 5 oncology providers/cancer advocates.
AIM 3: Incorporating results of aims 1 and 2 and what we learn from research on similar programs and our prior projects: a) develop a program to support self-care of symptoms and emotional needs once active treatment has ended, and b) try out the program with 6 SSBCS.
General methodology: This pilot study will use survey and in-person interviews to generate data to guide the development of a peer-delivered program that will provide SSBCS with the tools to manage their needs in the period following active treatment. Our methods include surveys, focus groups, and in-depth interviews. The in-person interviews will be conducted after the telephone survey so that we can explore the needs identified by telephone, in more depth in-person. The results from the pilot, literature, and our current program will be used to develop a preliminary version of the survivor-to-survivor delivered program to be tried out with 6 SSBCS. The program will be revised based on the input of the SSCBS who try the program out.
Innovative elements: This project is innovative for several reasons. No one has assessed systematically the needs of SSBCS. Only one project has developed and tested a support intervention for Latinas during this important phase, but that study had several limitations. It was small (N=52), did not achieve significant improvements in participants’ physical and mental health compared to a control group, and did not distinguish between English- and Spanish-speaking Latinas.
Community involvement: Our existing field staff (18 SSBCS and advocates), sharing what they have heard from hundreds of SSBCS, have voiced the inordinate challenges that surface as women finish active treatment, i.e., a spike in fear of recurrence and anxiety, uncertainty about what to expect as a result of their treatments, pain and fatigue, and concerns about their families, jobs, finances and insurance coverage. Our five-county partnership consists of an extensive network of community-based organizations and clinical partners, and an active community advisory board and steering committee that are representative of the broader partnership. The partnership generated the idea and has been the impetus for this grant application.
Future Plans: This collaborative project between the University of California San Francisco, Círculo de Vida Cancer Support and Resource Center, and the broader partnership will prepare us to conduct a RCT study of a program for SSBCS during the transition after completing active treatment. It will build capacity among trained community-based research staff participating in the Nuevo Amanecer trial to meet the needs of SSBCS throughout survivorship.
Final Report (2016)
Background: Spanish-speaking Latina breast cancer survivors (SSBCS) suffer worse post-treatment health-related quality of life (QoL) in all domains and more pain, depressive symptoms, distress, and fatigue compared to whites, yet interventions to support them during the post-treatment transition are lacking.
Purpose: The purpose of this community-based participatory research project was to assess post-treatment symptom management, psychosocial and informational needs of Spanish-speaking breast cancer survivors (SSBCS).
Methods: Telephone survey and semi-structured interviews of 143 SSBCS, 5 cancer support providers, and 4 cancer physicians.
Results: In total, 118 telephone surveys and 25 semi-structured interviews with SSBCS, and 5 support provider and 4 physician interviews were completed (representing the successful completion of Aims 1 and 2). Surveys identified the five most bothersome (bothered by it in the past month at least “somewhat,” “quite a bit,” or “a lot”) physical symptoms as: joint pain (53%), fatigue (42%), hot flashes (38%), numbness/tingling in hands/feet (35%), and vaginal dryness (30%). The five most bothersome emotional symptoms were thoughts of recurrence or new cancers (42%), depression/sadness (36%), anxieties (34%), stress (32%), and loss of interest in usual activities (24%). Eight themes emerged from interviews: 1) unmet physical symptom management needs; 2) sense of abandonment by health care system post-treatment; 3) need for formal transition from oncology to primary care; 4) social support often ends when treatment ends; 5) challenges resuming roles; 6) elevated anxiety when obtaining follow-up care; 7) desire for information on treatment side effects; and 8) physicians want patients to know about symptom vigilance. SSBCS suggested survivorship programs include emotional support and tools/resources to help with the transition, symptoms, and distress.
Conclusions: Physical and psychosocial symptoms are common among SSBCS and lack information to manage cancer sequelae. SSBCS need culturally appropriate survivorship care programs that address symptom management, psychosocial distress, and information on follow-up care, healthy lifestyles, and strategies for coping with role reintegration.
Next steps: Integrating the information learned from the surveys and interviews, the research team developed a prototype of the survivorship care program and conducted a focus group in which they pretested the content among 6 SSBCS (successful completion of Aim 3). Next, they will write and submit a grant proposal to test the effectiveness of the program, using a CBPR approach.
Conference Abstract (2016)
Discovering the Post-treatment Self-care Needs of Spanish-speaking Latinas after Breast Cancer
Anna Maria Nápoles, PhD, MPH,1,2,3 Jasmine Santoyo-Olsson, MS,1,2 Carmen Ortiz, PhD,4 Anita L. Stewart, PhD,1,5
1 Center for Aging in Diverse Communities, University of California San Francisco (UCSF), 3333 California St., Suite 335, San Francisco, CA 94118, USA
2 Division of General Internal Medicine, Department of Medicine, UCSF, 3333 California St., Suite 335, San Francisco, CA 94143-0856, USA
3 Helen Diller Family Comprehensive Cancer Center, UCSF, 1450 3rd St., San Francisco, CA 94158
4 Círculo de Vida Cancer Support and Resource Center, 2601 Mission Street, Suite 702, San Francisco, CA 94110 USA
5 Institute for Health and Aging, UCSF, 3333 California St., Suite 340, San Francisco, CA 94143-0856, USA
Objective: Working with community-based partners, this study sought to identify the most important post-treatment symptom management, psychosocial, and informational needs of Spanish-speaking breast cancer survivors (SSBCS) to inform the development of a peer-delivered intervention to address these needs.
Methods: We conducted a cross-sectional telephone survey of 118 SSBCS, semi-structured focus group and individual interviews with 25 SSBCS, and semi-structured interviews with 5 cancer support providers and 4 breast cancer clinical care providers. We queried all respondents about the symptom management, psychosocial, and informational needs of SSBCS following the end of active treatment.
Results: Mean age of telephone survey respondents was 55 years (SD=12.3), all were foreign-born, most had less than a high school education (66%), most were of Mexican origin (51%), and most had completed active treatment within 2 years (69%). SSBCS who completed semi-structured interviews were similar to telephone survey respondents on demographic characteristics. Surveys identified the five most bothersome (bothered by it in the past month at least “somewhat,” “quite a bit,” or “a lot”) physical symptoms as: joint pain (53%), fatigue (42%), hot flashes (38%), numbness/tingling in hands/feet (35%), and vaginal dryness (30%). The five most bothersome emotional symptoms were thoughts of recurrence or new cancers (42%), depression/sadness (36%), anxieties (34%), stress (32%), and loss of interest in usual activities (24%). Other issues included problems with sleep (40%), memory (33%), and ability to concentrate (26%). The majority expressed interest in obtaining help with eating a healthier diet (74%), knowing what medical tests are recommended after breast cancer (70%), getting more exercise (69%), managing stress (63%), and doing yoga or meditation (55%). Eight themes emerged from semi-structured interviews: 1) unmet physical symptom management needs; 2) sense of abandonment by health care system post-treatment; 3) need for formal transition from oncology to primary care; 4) social support often ends when treatment ends; 5) challenges resuming roles; 6) elevated anxiety when obtaining follow-up care; 7) desire for information on treatment side effects; and 8) physicians want patients to know about symptom vigilance. SSBCS suggested survivorship programs include emotional support and tools/resources to help with the transition, reintegration back into life (work, social and partner issues), symptoms, and distress.
Conclusions. SSBCS suffer significant post-treatment symptoms and distress and lack information to manage cancer sequelae. This lack of information could interfere with reporting of symptoms to health care providers and adherence to hormonal therapies. SSBCS need culturally appropriate survivorship care programs that address symptom management and psychosocial distress, and provide information on follow-up care, healthy lifestyles, and strategies for coping with role reintegration.
Potential Impact: Results were used to develop a prototype of a peer-delivered survivorship program for SSBCS to be tested in a follow-up study. Obtaining input from survivors and providers should improve the program’s relevance and potential usefulness. This program could reduce symptom and psychosocial health disparities experienced by SSBCS and improve the quality of their lives and follow-up care.
Acknowledgements of Funding: This research was supported by funds from the California Breast Cancer Research Program grant number 19AB-2500; grant number 1U54CA153511 from the National Cancer Institute; and grant number 1 P30 AG15272 from the National Institute on Aging.