BackgroundFinancial toxicity contributes to psychosocial distress among cancer patients and survivors. Yet, contextual factors unique to rural settings affect patient experiences, and a deeper understanding is needed of the interplay between financial toxicity and health care team communication and its association with psychosocial well‐being among rural oncology patients.PurposeWe examined associations between financial toxicity and psychosocial well‐being among rural cancer patients, exploring variability in these linkages by health care team communication.MethodsUsing data from 273 rural cancer patients who participated in Cancer Support Community's Cancer Experience Registry, we estimated multivariable regression models predicting depression, anxiety, and social function by financial toxicity, health care team communication, and the interplay between them.ResultsWe demonstrate robust associations between financial toxicity and psychosocial outcomes among our sample of rural cancer patients and survivors. As financial toxicity increased, symptoms of depression and anxiety increased. Further, financial toxicity was linked with decreasing social function. Having health care team conversations about treatment costs and distress‐related care reduced the negative impact of financial toxicity on depressive symptoms and social function, respectively, in rural cancer patients at greatest risk for financial burden.ConclusionsFinancial toxicity and psychosocial well‐being are strongly linked, and these associations were confirmed in a rural sample. A theorized buffer to the detrimental impacts of financial toxicity—health care team communication—played a role in moderating these associations. Our findings suggest that health care providers in rural oncology settings may benefit from tools and resources to bolster communication with patients about costs, financial distress, and coordination of care.
Background: Cancer patients and survivors experience distress related to physical, psychological, social and financial concerns. Individuals diagnosed with triple negative breast cancer (TNBC) may be at increased risk of distress due to the aggressive nature of the illness and high rates of recurrence. The aim of the present study was to describe how TNBC patients characterize cancer-related distress and concerns and identify factors associated with distress. Methods: Cancer Support Community’s Cancer Experience Registry® (CER) is an online research initiative examining the physical, emotional, practical, and financial impact of cancer. The CER measures cancer-related distress using CancerSupportSource™ (CSS), a 25-item validated distress screening tool in which participants rate their level of concern (0=Not at all; 4=Very seriously) across five key domains: (1) emotional well-being (EWB; 8 items, α=.91); (2) symptom burden and impact (SYM; 8 items, α=.90); (3) body image and healthy lifestyle (BHL; 4 items, α=.80); (4) healthcare team communication (HCC; 2 items, α=.74); (5) relationships and intimacy (REL; 2 items, α=.71). CSS subscale scores were calculated as the average item rating. For item analysis, the proportion indicating moderate to very serious concern was reported. From January 2015 to August 2021, a total of 195 US residents with a history of TNBC took part in the CER and completed CSS. Multiple linear regression analysis was used to estimate the relationships between CSS subscales and socio-demographic variables (age, low-income status, employment status) and clinical history (time since diagnosis, advanced or metastatic disease, and currently receiving treatment). Results: The sample was 82% Non-Hispanic White, 7% Non-Hispanic Black, 5% Hispanic, and 7% Non-Hispanic other/multiracial. 17% reported annual household income <$40K. 44% was employed full-time, 12% part-time, 18% retired, and 24% unemployed due to disability or other reason. Mean age was 53 (SD=10) years; 11% were < 40 years. 14% of participants were < 1 year of cancer diagnosis, 27% 1 to < 2 years, 34% 2 to < 5 years, and 25% ≥5 years. 41% were currently receiving treatment, and 27% were diagnosed with advanced or metastatic disease. The mean distress subscale score was highest for concerns about BHL (1.61), followed by EWB (1.29), SYM (1.27), REL (1.04), and HCC (0.83). With regard to concerns about BHL, over half were moderately to very seriously concerned with eating and nutrition (55%) and exercise (55%). Regarding EWB, the items of greatest distress were worrying about the future (53%) and worrying about family (39%). For SYM, over half (53%) were concerned about thinking clearly, and 49% were concerned about fatigue. Participants reported moderate to very serious concern about intimacy, sexual function, and/or fertility (36%) and relationships (22%). Regarding HCC, 24% reported concern related to treatment decisions, while 22% reported concern about communicating with their doctor. In multivariate analysis, time since diagnosis was inversely associated with concerns about EWB (B=-0.03, p=.030), such that distress was higher closer to diagnosis. TNBC patients with advanced or metastatic disease status had significantly higher distress related to SYM (B=0.40, p=.009) and HCC (B=0.61, p=.001). Younger age was associated with concerns about BHL (B=-0.02, p=.011) and REL (B=-0.02, p=.006). Finally, unemployment was associated with higher distress related to EWB (B=0.57, p=.001), SYM (B=0.63, p<.001), BHL (B=0.42, p=0.03), and REL (B=0.70, p<.001). Conclusions: In this sample, average levels indicated slight distress across multiple domains. Many TNBC patients reported concerns that were physical and future-oriented, highlighting critical areas of unmet need. Factors of less time since cancer diagnosis, advanced/metastatic disease, younger age, and unemployment were predictors of higher levels of distress. Citation Format: Caroline Lawrence, Erica E. Fortune, Heather Badt, Kara Doughtie, Madyson L. Popalis, Melissa F. Miller. Cancer-Related Distress and Unmet Needs Among Triple Negative Breast Cancer Patients: Findings from the Cancer Experience Registry [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P4-05-01.
Background: Financial toxicity associated with cancer and its treatment can negatively impact treatment adherence and quality of life. Individuals with triple negative breast cancer (TNBC) may be at increased risk for financial toxicity due to the aggressive nature of the disease and high rate of recurrence. The objective of this study was to characterize financial experiences of TNBC survivors, their descriptions of communication with providers concerning treatment costs, and correlations between financial toxicity and psychosocial distress. Methods: From July 2017 to August 2021, 94 individuals with TNBC took part in Cancer Support Community’s Cancer Experience Registry® (CER). Participants completed items related to financial distress, including COmprehensive Score for Financial Toxicity (COST), an 11-item (0=Not at all, 4=Very much) measure of financial well-being (range 0-44; lower scores indicate worse financial well-being), dichotomous (yes or no) items assessing patient-provider communication, and Patient-Reported Outcomes Measurement Information System-29 (PROMIS-29 v2.0). Bivariate relations were assessed using Pearson’s correlation. Results: Participants were 81% non-Hispanic White, 6% Black, and 6% Hispanic. Mean age was 52 years (SD=11.3); 14 (15%) reported household income <$40K. Median time since diagnosis was 2 years; 15% (n=14) reported metastatic breast cancer and 36% were currently receiving treatment. Concerning out-of-pocket cancer-related costs, 56% of our sample reported spending >$250 per month; 32% >$500; 13% >$1000. To reduce costs, 23% sometimes, often, or always postponed seeking psychological support, 19% delayed follow-up on recommendations, 6% postponed doctor’s appointments, and 5% skipped medication. The mean COST score was 23.0 (SD=12.3), indicating mild financial distress overall. Less than half of the sample (46%) indicated no financial toxicity (scores >25), 29% mild financial toxicity (scores 14-25), 22% moderate (score 1-13), and 3% severe (score of 0). The frequency of individual COST items showed 61% reported (somewhat, quite a bit, or very much) worry about future financial problems due to treatment costs; 14% were unable to meet monthly expenses; 49% reported concern about keeping their job or income; 47% reported frustration that they could not work or contribute as usual. COST scores were inversely correlated to PROMIS anxiety (r=-.45, p<.001), depression (r=-.44, p<.001), and sleep disturbance subscales (r=-.48, p<.001), such that lower financial well-being related to more symptomology. COST scores were positively associated with the social function subscale (r=.46, p<.001), so that better financial well-being related to higher social functioning. Regarding patient-provider communication, 70% reported their health care team did not discuss costs, 62% did not discuss impact of TNBC and treatment on work, and 59% did not discuss financial concerns. One-third (34%) wished they received more financial advice and assistance. Conclusion: In this sample of TNBC patients, average levels of financial toxicity were in the mild range. However, many reported moderate to severe toxicity (25%). Greater financial toxicity related to increased symptoms of anxiety, depression, sleep disturbance, and worse social functioning. Despite this, results indicate there is little patient-provider discussion about financial burden, with more than half of our sample reporting their health care team did not discuss costs, impact on work, or financial distress. One-third of participants indicated desire for more financial advice and assistance highlighting an opportunity to better serve TNBC patients, who may be at an increased risk of financial toxicity. Citation Format: Kara Doughtie, Erica E. Fortune, Heather Badt, Caroline Lawrence, Madyson L. Popalis, Melissa F. Miller. Experience of Financial Toxicity and Distress Among Individuals Diagnosed with Triple Negative Breast Cancer: Findings from the Cancer Experience Registry [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P6-05-29.
Background: Triple negative breast cancer (TNBC) can spread quickly and has a higher rate of recurrence than other breast cancers. Due to TNBC’s aggressive nature and treatment, patients can experience adverse symptoms and side effects. Palliative care (PC) is intended to improve health-related quality of life (HRQOL) for patients with serious disease at any stage of their illness. However, PC is often conflated with end-of-life care which can affect its rates of utilization. The goals of this study were to explore how TNBC patients characterize their HRQOL by time since diagnosis and describe the rate of utilization in the past year of PC providers for symptom and side effect management. Methods: Data was collected through Cancer Support Community’s Cancer Experience Registry® (CER). From Jan 2015 to Aug 2021, 209 individuals with TNBC enrolled in the CER and completed the Patient-Reported Outcomes Measurement Information System-29 (PROMIS-29 v2.0) profile measure. Five domains assess symptoms with higher scores corresponding to worse symptomology (depression, anxiety, pain interference, fatigue, and sleep disturbance) and two domains assess function with lower scores corresponding to worse functioning (physical and social). Scale scores were converted to standardized T scores and compared against the U.S. population (M=50, SD=10) and reference values for newly diagnosed patients with all types of breast cancer. We considered a group score difference of 3 points clinically meaningful. Moderate to severe impairments are reported as percentages of the sample that have PROMIS scores >1SD from M=50. Of the 209 TNBC patients, 66 (32%) participated after Nov 2018 and answered newer survey items about utilization of PC providers in the past year. Results: Participants were mainly Non-Hispanic White (81%); resided in suburban/urban areas (84%); reported household income >$40K (64%); Mean age=53y (SD=10; range 28-77). Median time since diagnosis was 2y. 25% reported advanced or metastatic disease; 41% were currently receiving treatment. TNBC patients reported elevated symptoms and deficits in functioning relative to the U.S. population (score difference>3) for all PROMIS subscales except depression (M=51.9) and social function (M=48.8). Fatigue and anxiety scores were highest (M=55.3 and M=56.2, respectively) exceeding the threshold for mild severity. About one-third of participants reported moderate to severe levels of symptom impairment for fatigue (36%), anxiety (36%), and pain interference (32%). Newly diagnosed participants reported higher levels of symptom severity and functional deficits which improved over time; however, survivors’ PROMIS scores remained worse than the U.S population for fatigue and anxiety. Compared to reference values for breast cancer patients, newly diagnosed (< 2y) TNBC participants (n=83) reported elevated symptoms for fatigue, anxiety, and depression and worse social function (score differences, 4.0, 9.1, 5.3, and 3.9, respectively). In the past year, 69% saw an oncology provider for symptom and side effect support, 44% saw a primary care provider, and 9% a PC provider. Some participants sought care for symptom and side effect management from allied and psychosocial providers such as pharmacists (28%), counselors (25%), and physical therapists (24%). Conclusions: Among TNBC patients, we observed higher levels, on average, of fatigue, anxiety, and depression, and lower social function compared to reference values for breast cancer patients and the U.S. population. Symptom severity and functional deficits were highest among individuals newly diagnosed with TNBC suggesting the importance of incorporating PC into cancer care early in the disease course. TNBC patients and survivors most frequently rely on primary care and oncology care teams for management of symptoms. Future research should examine access barriers to PC providers. Citation Format: Madyson L. Popalis, Heather Badt, Kara Doughtie, Caroline Lawrence, Melissa F. Miller. Symptom and Functional Status for Individuals with Triple Negative Breast Cancer and Palliative Care Utilization: Findings from the Cancer Experience Registry [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P5-07-10.
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