Posttreatment survivorship care needs of Spanish-speaking Latinas with breast cancer
Background A comprehensive assessment of Spanish-speaking breast cancer survivors’ (SSBCS) survivorship needs is lacking.
Objective Assess SSBCS’ posttreatment symptom management, psychosocial, and informational needs.
Methods 118 telephone surveys and 25 in-person semistructured interviews with SSBCS, and semistructured interviews with 5 support providers and 4 physicians who serve SSBCS from 5 Northern California counties.
Results Based on the interview and survey results, the most bothersome physical symptoms (bothered by it in the past month Somewhat/Quite a bit/A lot) were identified as: joint pain, fatigue, hot flashes, numbness in hands/feet, and vaginal dryness. The most bothersome emotional symptoms were: thoughts of recurrence/new cancers, depression/sadness, anxieties, and stress. Seven themes emerged from interviews: unmet physical symptom management needs; social support from family/friends often ends when treatment is completed; challenges resuming roles; sense of abandonment by health care system when treatment ends; need for formal transition from active treatment to follow-up care; fear of recurrence especially when obtaining follow-up care; and desire for information on late effects of initial treatments and side effects of hormonal treatments. We present a conceptual framework for survivorship care interventions for SSBCS.
Limitations Sample may not represent SSBCS’ concerns seen outside of Northern California hospitals.
Conclusions Physical and psychosocial symptoms were common among SSBCS. This population needs culturally appropriate survivorship care programs that address symptom management, psychosocial concerns, follow-up care, and healthy lifestyles.
Funding Supported by funds from the California Breast Cancer Research Grants Program Office of the University of California, grant number19AB-2500; from the National Cancer Institute, grant numbers 1U54CA153511 and 5 R25 CA13430; from the National Institute on Aging, grant number P30 AG15272; and University of California San Francisco-Clinical & Translational Science Institute, grant number UL1 TR000004 from the National Center for Advancing Translational Sciences, National Institutes of Health.
Accepted for publication December 22, 2016. Correspondence Anna M Nápoles, PhD, MPH; anapoles@ucsf.edu. Disclosures Dr Dixit is a consultant and advisor to Merck Sharp & Dohme Corp. All the other authors report no disclosures or conflicts of interest.
JCSO 2017;15(1):20-27
doi: https://doi.org/10.12788/jcso.0325
©2017 Frontline Medical Communications
Conceptual framework of interventions
Based on triangulation of survey and interview results, we compiled a conceptual framework that includes needs identified, suggested components of a survivorship care intervention to address these needs, potential mediators by which such interventions could improve outcomes, and relevant outcomes (Figure). Survivorship care needs fell into four categories: symptom management, psychosocial, sense of abandonment by health care team, and healthy lifestyles. Survivorship care programs would provide skills training in symptom and stress management, and communicating with providers, family, friends, and coworkers. Mediators include increased self-efficacy, knowledge and perceived social support, ultimately leading to reduced distress (anxiety and depressive symptoms) and stress, and improved health-related quality of life.
Conclusions
Our study aimed to identify the most critical needs of SSBCS in the posttreatment survivorship phase to facilitate the design of survivorship interventions for this vulnerable group. SSBCS, cancer support providers, and cancer physicians reported substantial symptom management, psychosocial, and informational needs among this population. Results from surveys and open-ended interviews were remarkably consistent. Survivors, physicians, and support providers viewed transition out of active treatment as a time of increased psychosocial need and heightened vulnerability.
Our findings are consistent with needs assessments conducted in other breast cancer survivors. Similar to a study of rural white women with breast cancer, fear of recurrence was among the most common psychosocial concerns.17 Results of two studies that included white, African American and Latina breast cancer survivors were consistent with ours in finding that pain and fatigue were among the most persistent symptoms; in both studies, Latinas were more likely to report pain and a higher number of symptoms.7,18 The prevalence of sleep problems in our sample was identical to that reported in a sample of African American breast cancer survivors.19 Our findings of a high need for symptom management information and support, social support from family and friends, and self-management resources were similar to studies of other vulnerable breast cancer survivors.18,20
Our results suggest that it is critical for health care professionals to provide assistance with managing side effects and information to alleviate fears, and reinforce behaviors of symptom monitoring and reporting, and adherence to follow-up care and hormonal therapies. Yet this information is not being conveyed effectively and is complicated by the need to balance women’s need for information with minimizing anxiety when providing such information.
A limitation of our study is that most of our sample was Mexican origin and may not reflect experiences of Spanish-speaking Latinas of other national origin groups or outside of Northern California. Another limitation is the lack of an English-speaking comparison group, which would have permitted the identification of similarities and differences across language groups. Finally, we did not interview radiation oncologists who may have had opinions that are not represented here.
Survivorship care programs offer great promise for meeting patients’ informational and symptom management needs and improving well-being and communication with clinicians.21 Due to limited access to survivorship care information, financial hardships, and pressures from their families to resume their social roles, concerted efforts are needed to develop appropriate survivorship programs for SSBCS.22 Unique language, cultural and socioeconomic factors of Spanish-speaking Latinas require tailoring of cancer survivorship programs to best meet their needs.23 These programs need to provide psychosocial stress and symptom management assistance, simple information on recommended follow-up care, and healthy lifestyle and role reintegration strategies that account for their unique sociocultural contexts.
