Worry about recurrence and patient preferences for provider roles in collaborative breast cancer care.

158 Background: Prior studies have shown that worry about recurrence is a common problem during cancer treatment and survivorship and may be associated with symptom response and surveillance after primary treatment. However, whether worry about recurrence influences patient preferences for which provider to see for their continuing care remains unknown. Methods: A random sample of patients newly diagnosed with breast cancer in 2014-15 as reported to the Georgia and Los Angeles SEER registries were surveyed approximately 6 months after diagnosis (N = 2,502, 70% response rate). Frequency of worry about recurrence was defined by asking women to indicate on a 5-pt scale how often they worried about their cancer coming back in the past month (not at all-always) and was then dichotomized as frequent worry (sometimes/often/almost always) vs. less worry (almost never/rarely). Patient preferences for which provider manages certain aspects of care after treatment were ascertained for: follow-up mammograms, screening for other cancers, general preventive care, and treatment of comorbidities. Response categories included primary care clinician (PCP), cancer doctors, either or both. The associations between patient-reported worry about recurrence with preferences for provider roles were assessed using multinomial logistic regression. Results: In this sample, 37% of women reported worrying frequently about recurrence. Controlling for patient and clinical factors, women who reported more frequent worry (vs. less worry) were more likely to prefer to see both clinicians (vs. PCP only) for mammograms (OR: 2.3, 95%CI: 1.5, 3.6), screening for other cancers (OR: 2.3, 95%CI: 1.5, 3.5), general preventive care (OR: 1.6, 95%CI: 1.1, 2.3) and comorbidity care (OR: 1.5, 95%CI: 1.03, 2.2). Conclusions: Frequent worry about recurrence was common in this sample of women with favorable prognosis breast cancer. More frequent worry about breast cancer recurrence was associated with stronger preferences for seeing both PCPs and oncologists for continuing care after treatment. Assessing and managing worry about recurrence early in survivorship may improve collaborative cancer care and reduce duplicated services after treatment.

Assessing associations between symptoms and survivorship care plans among long-term cancer survivors.

246 Background: Nearly 14 million Americans are cancer survivors, and numbers are increasing. Common long-term and late effects reported by survivors include anxiety, depression, fatigue, pain, and others. In order to address potential long-term and late effects of cancer and its treatment, the IOM recommends that patients receive a Survivorship Care Plan (SCP), a record of care received and important disease characteristics and a follow-up care plan incorporating available evidence-based standards of care. Our aims were to assess prevalence of self-reported moderate-severe symptoms and worry, and test for associations with SCP receipt. Methods: We used data from CanCORS II, a national study of lung and colorectal cancer patients. Long term survivors were diagnosed in 2004, and showed no sign of disease seven years post-diagnosis. We included 888 lung and colorectal cancer survivor respondents to the CanCORS II Long Term Survivor Survey. We examined moderate-severe pain (3, 4, or 5 on the SF-36 pain interference item), fatigue (less than 40 on the SF-36 vitality score), depressive symptoms ( > 6 on CESD-8), and worry about recurrence. SCP receipt was defined as receipt of a treatment summary, follow-up care plan, or both. Multivariable logistic regression was used to test for associations between SCP and symptoms and worry. Results: In all, 27% of survivors had 0, and 26% had both SCP components. Moderate-severe pain was reported by 32% of colorectal and 42% of lung cancer survivors, and fatigue by 15% of colorectal and 30% of lung cancer survivors. Moderate-severe depressive symptoms were reported by 12% of colorectal cancer and 16% of lung cancer survivors. Less than ¼ (23%) reported worry about recurrence sometimes, often or always. In analyses adjusting for demographics and health status, receipt of both SCP components was associated with lower odds of moderate-severe pain (OR = 0.78, p = 0.004), fatigue OR = 0.42, p = 0.006), and depressive symptoms (OR = 0.48, p = 0.03). Conclusions: Receipt of a complete SCP was associated with lower odds of moderate-severe pain, fatigue, and depressive symptoms. We found no association with worry. However, only 26% of survivors reported receipt of both SCP components as recommended.

Worry about Breast Cancer Recurrence: A Population-based Analysis

As more patients with breast cancer survive treatment, the importance of their long-term quality of life is increasing. One important concern for many survivors is fear of recurrence. To better understand worry about recurrence, we conducted a population-based statistical analysis. The National Health Interview Survey (NHIS) is the largest annual source of health information for the U.S. population. We obtained data from the 2010 survey, which asked breast cancer survivors about their fear of recurrence and quality of life. Data were analyzed using SUDAAN software. The 2010 NHIS sample represented 2,668,697 breast cancer survivors. On univariate analysis, worry about recurrence was correlated with current age ( P = 0.03) and radiation therapy ( P = 0.04). Worry was strongly associated with perceived risk of recurrence ( P < 0.01) and decreased overall quality of life ( P < 0.01) as well as lower self-reported physical ( P < 0.01) and mental ( P < 0.01) health and poor satisfaction with social activities and relationships ( P < 0.01). On multivariate analysis, worry was not independently associated with decreased quality of life ( P = 0.09). However, those who “always worried” about recurrence had a lower quality of life (odds ratio, 0.06; 95% confidence interval, 0.01 to 0.45). Worry about recurrence among breast cancer survivors is associated with age and radiation therapy and is correlated with self-reported physical health, mental health, social relationships, and overall quality of life. It is a significant predictor of decreased quality of life in those who worry the most. Screening for worry about recurrence is an important measure for the improvement of quality of life among breast cancer survivors.

Management of worry about recurrence in breast cancer survivors.

21 Background: Worry about recurrence is a significant concern for breast cancer survivors. We explored physicians‘ confidence and practices in identifying and managing worry. Methods: We surveyed a random sample of 1,500 surgeons and medical oncologists drawn from the AMA Masterfile in 2012. Physician responses to questions regarding their confidence were stratified by practice specialty and compared using the Wilcoxon rank-sum test. Correlates of use of each strategy for managing worry were modeled using multiple variable logistic regression. Results: 896 physicians (59.7%) responded: 498 surgeons and 398 medical oncologists, of whom 85.5% saw breast cancer patients. 62% reported initiating discussions regarding worry about recurrence. Overall, medical oncologists reported more confidence than surgeons in their ability to present risk information to patients, identify survivors with high levels of worry, and help patients manage their worry (p<0.001). Of note, 40.2% of physicians reported low levels of confidence managing worries surrounding recurrence. Confidence presenting risk information was significantly associated with treatment volume, which was highest with >50 cases/year. Surgeons who routinely followed breast cancer survivors for >3 years reported higher confidence; no such correlation existed among medical oncologists, but >90% of this group routinely followed patients for >3 yrs. Female physicians were significantly more likely to report being able to identify survivors with high levels of worry. Practice in an academic setting demonstrated associations with increased confidence. Use of worry management strategies varied by specialty. Medical oncologists were more likely to prescribe medication, address concerns in detail themselves, or refer to a psychologist or social worker. Longer follow-up was associated with increased likelihood of physicians addressing concerns themselves. Conclusions: A sizeable minority of physicians lack confidence in their ability to identify and manage worry in cancer survivors. Medical oncologists and surgeons differ significantly in their approach to worry management, suggesting that greater attention toward this issue in training and continuing education may be warranted.

Desire for and use of genetic testing in a population-based sample of breast cancer patients.

6615 Background: Prior research suggests that receipt of genetic testing to assess risk of disease in patients or their families is not limited to those who meet high-risk criteria (i.e., diagnosed at young age &/or with strong family history). There is little research from large population-based samples describing patterns and correlates of genetic testing receipt or reasons why patients undergo testing. Methods: We surveyed 2290 women newly diagnosed with breast cancer reported to the Detroit & Los Angeles SEER registries from 6/05-2/07. We merged these data to SEER and re-surveyed them again approximately 4 years later (n=1536). The primary outcomes were patient reports of a strong desire for genetic testing, participation in a discussion about genetic testing, and receipt of genetic testing. We also evaluated patient reports of reasons for getting tested. We compared dependent and independent factors using chi-square tests and used logistic regression to evaluate correlates of each outcome. Results: One third (33.9%) reported a strong desire to be tested, of whom 54% discussed testing with a health professional, & 46% were tested. A strong desire to be tested was associated with younger age (F=32.03, P<0.001), minority race (F=62.5, P<0.001), family history of breast &/or ovarian cancer (F=18.5, P<0.001) and worry about recurrence (OR: 1.8; 95% CI: 1.3-2.6). Overall, 19.3% were tested. Test receipt was significantly associated with younger age (F=26.8, P<0.001), higher education (OR: 1.8; 95% CI:1.13-2.71), and family history (F=25.1, P<0.001). Of those tested, reasons included: physician recommendation (61.8%), wanting more information about one’s own health (51.8%), wanting more information for family (54.2%), and family desire (13.6%). 7.8% of those not tested indicated it was because of the expense. Conclusions: Many women have a strong desire for genetic testing after diagnosis of breast cancer but often do not discuss testing with professionals. Desire for testing was correlated with pertinent clinical factors but also non-clinical factors such as minority race and worry about recurrence. Results suggest the continued need to address patient desire for testing and selection of appropriate patients for testing.

Is contralateral prophylactic mastectomy (CPM) overused? Results from a population-based study.

26 Background: The growing rate of CPM among women diagnosed with breast cancer has raised concerns about potential for over-treatment yet, little is known about factors that affect the decisions for this surgical treatment option. Methods: We surveyed 2,245 women newly diagnosed with breast cancer and reported to the Detroit and Los Angeles SEER registries from 6/05-2/07. We merged these data to SEER and re-surveyed them again approximately 4 years later (n=1,525). The primary outcome was receipt of CPM. We modeled surgical treatment decision making in two stages: any mastectomy (including CPM) vs. lumpectomy, and CPM vs. unilateral mastectomy (UM) among mastectomy-treated patients. The primary independent variable was clinically significant risk of developing contralateral disease (family history of at least 2 family members with breast cancer and/or a positive genetic test). We also evaluated the degree to which worry about recurrence drove initial treatment decisions (very vs. somewhat/not at all) and controlled for race/ethnicity, age, stage and SEER site. Results: Of the 1,446 women who had not had a recurrence of breast cancer by the time 2 survey, 35% considered CPM and 7.4% received it. Among those who received a mastectomy for the affected breast the figures were 53% and 19%, respectively. About 70% of patients who received CPM were clinically at very low risk for contralateral disease. 90% of those who got CPM reported being very worried about recurrence when making their treatment decision, compared to 80% of those who received UM (p<0.05). Multivariate regression showed that receipt of CPM vs. UM was associated with having a family history (OR 5.1; 95% CI: 2.49-10.1) and a positive genetic test (OR: 10.93; 95% CI: 3.37-35.71), but was also associated with greater worry about recurrence (OR: 2.07; 95% CI: 1.01-4.51). Conclusions: Many women considered CPM despite the fact that very few of them had clinically significant risk of contralateral breast cancer. Most women who had CPM did not have a clinical indication for considering it and thus not expected to benefit in terms of disease free survival. More research is needed about the underlying factors driving decision-making for CPM.