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
I have my doctor but she is not a specialist. She does what I tell her to and orders a mammogram every year. But, I don’t go to the oncologist anymore, and so I worry. With the specialists, I feel protected. (FocGrp1#5)
Physicians acknowledged the lack of a formal transition to primary care such as a survivorship care program.
Follow-up care issues were common. Physicians stressed that women needed to know how often to return for follow-up once active treatment ends and about recommended examinations and tests, especially when receiving hormonal therapy. Physicians indicated the need for patient education materials specific to patients’ treatments, for example, elevated risk of heart disease with certain chemotherapy agents. An oncologist expressed concern that PCPs are not prepared adequately about late effects and hormonal treatment side effects, and suggested providing summary notes for PCPs detailing these.
Survivors identified several barriers to follow-up care: lacking information on which symptoms merited a call to physicians; financial burden/limited health insurance; lacking appointment reminders; fear of examinations; and limited English proficiency. A survivor stated,
If you have insurance, you can make your appointment, see the doctor, and have your mammogram. I stopped taking my pills because I didn’t have insurance. I tried to get them again but they told me they would cost me a thousand dollars. (FocGrp1#5)
One oncologist suggested scheduling a follow-up appointment before patients leave treatment and calling patients who miss appointments.
Facilitators of regular follow-up care identified by survivors were physicians informing them about symptom monitoring and reporting, having a clinic contact person/navigator, being given a follow-up appointment, being assertive about one’s care, and physicians’ reinforcement of adherence to hormonal treatment and follow-up. According to support providers, a key facilitator was having a clinic contact person/navigator. Once treatment ended, support providers often served as the liaison between the patient and the physician, making them the first point of contact for symptom reporting.
Fear of recurrence especially when obtaining follow-up care. Fear of recurrence dominated survivor interviews. This fear was heightened at the time of follow-up examinations or when they experienced unusual pain. A survivor commented,
Every time I’m due for my mammogram, I can’t sleep, worrying. I lose sleep until I get the letter with my results. Then I feel at peace again. (FocGrp1#9)
Support providers discussed the need to provide reassurance to SSBCS to help them cope with fears of recurrence. Physicians expressed challenges in allaying fears of recurrence among SSBCS, requiring a lot of time when recommending follow-up mammograms.
Desire for information on late effects of treatments and side effects of hormonal therapies. All survivors expressed receiving insufficient information on potential symptoms and side effects. One stated,
Doctors only have five minutes. There has never been someone who gave me guidance like, ‘From now on you have to do this or you might get these symptoms now or in the future. (Survivor#6019)
They indicated uncertainty about what symptoms were “normal” and when symptoms merited a call to the physician. Several survivors reported being unaware that fatigue, arthralgia and neuropathy were side effects of breast cancer treatments until they reported these to physicians.
Physicians stressed the importance of women knowing about the elevated risk of future cancers, symptoms of recurrence, and seeking follow-up care if they experience symptoms that are out of the ordinary. Support providers felt that it was important to provide SSBCS with information on signs of recurrence and when to report these. However, providers expressed concern that giving women too much information might elevate their anxiety. A physician suggested,
It’s probably better to have a symptom list that’s short and relevant for the most common and catastrophic things, same thing with side effects … short to avoid overwhelming the patient. (Physician#001)
Hormonal treatments were of special concern. Survivors expressed a need for information on hormonal treatments and support providers stressed that this information is needed in simple Spanish. Several survivors indicated they stopped taking hormonal treatments due to side effects. One woman experienced severe headaches and heart palpitations, stopped taking the hormonal medication, felt better, and did not inform her physician until her next appointment. A support provider stated,
What I hear from a lot of women is that if side effects are too uncomfortable, they just stop it (hormonal treatment) without saying anything to the doctor. So more information about why they have to take it and that there is a good chance of recurrence is really important. (SuppProv#101)
Likewise, physicians indicated that SSBCS’ lack of information on hormonal treatments often resulted in nonadherence, emphasizing the need to reinforce adherence to prevent recurrence.
