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
Unmet physical symptom management needs. The main physical symptoms reported by survivors and physicians in interviews were arthralgia, menopausal symptoms, and neuropathy. Fatigue was reported only by survivors. Many survivors and several support providers expressed that symptoms were poorly managed and often ignored. One stated,
I have a lot of pain where I had surgery, it burns. I worry a lot about my arm because I have sacs of fluid. My doctor only says, ‘They will dissolve over the years.’ So, I don’t feel any support. (FocGrp1#6)
Survivors reported side effects of hormonal therapies, and felt that physicians downplayed these to prevent them from discontinuing medications.
Social support from family and friends often ends when treatment ends. Many survivors described a loss of support from family and friends who expected them to get back to “normal” once treatment ended. One said,
My sisters have told me to my face that there’s nothing wrong with me. So now when people ask me, I say, ‘I’m fine, thank God, I have nothing,’ even though I’m dying of pain and have all these pills to take. (Survivor#1025)
A support provider related,
The client was telling me that as she was getting closer to finishing her treatment, her husband was upset because he felt like all she was doing was focusing on the cancer. I think caregivers, family, spouses, and children out of their own sort of selfishness want this person to be well. (SuppProv#104)
A few survivors said that family bonds were strengthened after cancer and several reported lacking support because their families were in their home countries.
Challenges resuming roles, especially returning to work. Survivors, support providers, and physicians described challenges and few resources as women transition back to their normal roles. Survivors questioned their ability to return to work due to physically demanding occupations. One stated,
I would like information on how to take care of myself, how working can affect this side if I don’t take care of it. I clean houses and I need both hands. (Survivor#3012)
Survivors described how changes in memory affected daily chores and work performance. Support providers and physicians described the need for resources to aid with return to work and household responsibilities. One physician noted,
There are usually questions about how to go ahead and live their lives from that point forward. It’s a sort of reverse shock: going back to life as they know it. (Physician#004)
Support providers and physicians mentioned that women needed help with resuming intimate partner relations.
Sense of abandonment by health care system once active treatment ends. Survivors, support providers, and physicians reported a loss of support and sense of abandonment by the patients’ oncology team at the end of active treatment. One survivor stated,
Once they tell you to stop the pills, ‘You’re cured, there’s nothing wrong with you,’ the truth is that one feels, ‘Now what do I do? I have no one to help me.’ I felt very abandoned. (FocGrp1#5)
A provider said,
The support system falls apart once women complete treatment. They lose their entire support system at the medical level. They no longer have nurses checking in about symptoms and addressing anything that’s come up. They won’t have access to doctors unless they’re doing their screening. (SuppProv#101)
An oncologist, noting that this loss of support occurs when women face pressures of transitioning back to work or family obligations, commented,
So here’s a woman whose marriage is in turmoil, whose husband may even have left her during this, and now her clinic is leaving her and she’s on her own … that must be scary as hell because there’s nobody out there to support her. (Physician#002)
Need for formal transition from active treatment to follow-up care. Two themes emerged about transitioning from active treatment: transferring care from oncologists to primary care physicians (PCP); and issues of follow-up care (with oncologists or PCPs). Survivors felt lost in transitioning from specialty to primary care, or expressed apprehension seeing a PCP rather than a cancer specialist. One stated,
