Anna María Nápoles1,2, Carmen Ortiz3, Jasmine Santoyo-Olsson1,2, Anita L Stewart4, Howard E Lee5, Ysabel Duron6, Niharika Dixit7, Judith Luce7, Diana J Flores8. 1. Center for Aging in Diverse Communities, University of California San Francisco (UCSF), 3333 California St., Suite 335, San Francisco, California 94143-0856, USA. 2. Division of General Internal Medicine, Department of Medicine, UCSF, 3333 California St., Suite 335, San Francisco, California 94143-0856, USA. 3. Círculo de Vida Cancer Support and Resource Center, 2601 Mission Street, Suite 500, San Francisco, California 94110 USA. 4. Institute for Health and Aging, UCSF, 3333 California St., Suite 340, San Francisco, California 94143-0856, USA. 5. Division of Oncology, Department of Medicine, Stanford University School of Medicine, 875 Blake Wilbur Dr., Stanford, California 94305 USA. 6. Latinas Contra Cancer, 255 North Market Street, Suite 175, San Jose, California 95110 USA. 7. Division of Hematology/Oncology, Department of Medicine, UCSF/San Francisco General Hospital, 995 Potrero Ave Building 80, Ward 84, San Francisco, California 94110 USA. 8. Biology Scholars Program, University of California, Berkeley, 2075 Valley Life Science Building, Berkeley, California 94720-3120 USA.
Abstract
BACKGROUND: A comprehensive assessment of Spanish-speaking breast cancer survivors' (SSBCS) survivorship needs is lacking. OBJECTIVE: Assess SSBCS' post-treatment symptom management, psychosocial, and informational needs. METHODS: 118 telephone surveys and 25 in-person semi-structured interviews with SSBCS, and semi-structured interviews with 5 support providers and 4 physicians who serve SSBCS from 5 Northern California counties. RESULTS: Surveys identified the most bothersome (bothered by it in the past month "somewhat/quite a bit/a lot") physical symptoms 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: 1) unmet physical symptom management needs; 2) social support from family/friends often ends when treatment is completed; 3) challenges resuming roles; 5) sense of abandonment by health care system when treatment ends; 6) need for formal transition from active treatment to follow-up care; 6) fear of recurrence especially when obtaining follow-up care; and 7) desire for information on late effects of initial treatments and side effects of hormonal treatments. Based on survey and interview results, 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. SSBCS need culturally appropriate survivorship care programs that address symptom management, psychosocial concerns, follow-up care, and healthy lifestyles.
BACKGROUND: A comprehensive assessment of Spanish-speaking breast cancer survivors' (SSBCS) survivorship needs is lacking. OBJECTIVE: Assess SSBCS' post-treatment symptom management, psychosocial, and informational needs. METHODS: 118 telephone surveys and 25 in-person semi-structured interviews with SSBCS, and semi-structured interviews with 5 support providers and 4 physicians who serve SSBCS from 5 Northern California counties. RESULTS: Surveys identified the most bothersome (bothered by it in the past month "somewhat/quite a bit/a lot") physical symptoms 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: 1) unmet physical symptom management needs; 2) social support from family/friends often ends when treatment is completed; 3) challenges resuming roles; 5) sense of abandonment by health care system when treatment ends; 6) need for formal transition from active treatment to follow-up care; 6) fear of recurrence especially when obtaining follow-up care; and 7) desire for information on late effects of initial treatments and side effects of hormonal treatments. Based on survey and interview results, 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. SSBCS need culturally appropriate survivorship care programs that address symptom management, psychosocial concerns, follow-up care, and healthy lifestyles.
Entities:
Keywords:
Latino/Hispanic; breast cancer; cancer survivorship; health disparities; quality of life
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