Financial Toxicity in People Living with Advanced Cancer: A New, Deadly, and Poorly Addressed Effect of Cancer and Necessary Treatment.

OBJECTIVES: Advances in cancer treatments have allowed improved outcomes, even with advanced disease. However, this progress has resulted in a new toxic effect termed 'financial toxicity.' Financial toxicity severely impacts quality of life, even among those insured. The purpose of this article is to gain better understanding of this relatively new concept to better care for our patients, presented primarily from a US perspective. DATA SOURCES: These include medical databases (PubMed, Scopus) and researcher experience. CONCLUSION: Financial toxicity is highly prevalent in patients with advanced cancer, and it is associated with multiple worsened outcomes. Those with advancing cancer are at accumulating risk of financial toxicity, exacerbated by other known risk factors. The effects of financial toxicity are debilitating, resulting in deleterious physical, psychological, spiritual, and social effects drastically affecting quality of life. Coping strategies such as taking less than prescribed therapy, delays seeking care, and poorly managed comorbid conditions potentially cause increased symptoms and worse outcomes. IMPLICATIONS FOR NURSING PRACTICE: Careful assessments by multidisciplinary health care teams could allow early intervention, timely referral to health professionals including social work or financial navigators, and provision of emotional support. Further studies are needed to explore solutions on an institutional and national level that can guide health policy and the creation of practice models that can reduce the harm of financial toxicity.

Inequalities in Financial Distress, Symptoms, and Quality of Life Among Patients with Advanced Cancer in France and the U.S.

BACKGROUND: Financial distress (FD) is common among patients with advanced cancer. Our purpose was to compare the frequency and intensity of FD and its associations with symptom distress and quality of life (QOL) in these patients in France and the U.S. MATERIALS AND METHODS: In this secondary analysis of two cross-sectional studies, we assessed data on 292 patients who received cancer care at a public hospital or a comprehensive cancer center in France (143 patients) or the U.S. (149 patients). Outpatients and hospitalized patients over 18 years of age with advanced lung or breast or colorectal or prostate cancer were included. Diagnosed cognitive disorder was considered a noninclusion criterion. Advanced cancer included relapse or metastasis or locally advanced cancer or at least a second-line chemotherapy regimen. Patients self-rated FD and assessed symptoms, psychosocial distress, and QOL on validated questionnaires. RESULTS: The average patient age was 59 years, and 144 (49%) were female. FD and high intensity were reported more frequently in U.S. patients than in French (respectively 129 [88%] vs. 74 [52%], p < .001; 100 [98%] vs. 48 [34%], p < .001,). QOL was rated higher by the U.S. patients than by the French (69 [SD, 18] vs. 63 [SD, 18], p = .003). French patients had more psychological symptoms such as anxiety (8 [SD, 4] vs. 6 [SD, 5], p = .008). Associations were found between FD and U.S. residence, FD and single status (0.907, p = .023), and FD and metastasis (1.538, p = .036). In contrast, negative associations were found between FD and older age (-0.052, p = .003) and FD and France residence (-3.376, p = .001). CONCLUSION: Regardless of health care system, FD is frequent in patients with advanced cancer. U.S. patients were more likely to have FD than French patients but reported better QOL. Further research should focus on factors contributing to FD and opportunities for remediation. IMPLICATIONS FOR PRACTICE: Suffering is experienced in any component of the lives of patients with a life-threatening illness. Financial distress (FD) is one of the least explored cancer-related symptoms, and there are limited studies describing its impact on this frail population. This study highlights the high frequency and severity of FD in patients with advanced cancer in the U.S. and France as well as its impact on their physical and emotional symptoms and their quality of life in these different health care systems. It is necessary for all health care providers to explore and evaluate the presence of FD in patients living with life-threatening illnesses.

Testing the feasibility of using the Edmonton Symptom Assessment System (ESAS) to assess caregiver symptom burden.

OBJECTIVE: Caregiver symptom assessment is not part of regular clinical cancer care. The ESAS (Edmonton Symptom Assessment System) is a multidimensional tool regularly used to measure symptom burden in patients but not caregivers. The objectives of the present study were to determine the feasibility of the ESAS in caregiver completion (defined as ≥ 9 of 12 items) and determine its concurrent validity with the Zarit Burden Interview-12 (ZBI-12). METHOD: We conducted a prospective study on 90 patient-primary caregiver dyads seen in an outpatient supportive care center in a cancer center. The 12 item ESAS-FS (financial-spiritual) was completed by the dyads along with other clinical and psychosocial measures. RESULTS: The caregiver ESAS was found to be feasible (90/90 caregivers, 100% completed ≥ 9/12 items) and useful (66/90 caregivers, 73%) by caregivers to report their symptom burden. Some 68 of 90 (76%) caregivers had symptom distress scores ≥ 4 on at least one symptom. A significant association was found between the ESAS scores of caregivers and patients for fatigue (0.03), depression (<0.01), anxiety (<0.01), sleep (0.05), well-being (<0.01), financial distress (<0.01), spiritual pain (<0.01), and total ESAS score (<0.01). Concurrent validity with the ZBI-12 was not achieved (r = 0.53, p = 0.74). A significant correlation was found between caregiver ESAS scores and time spent feeding, housekeeping, total combined caregiver activities, and total ZBI-12 scores. SIGNIFICANCE OF RESULTS: The caregiver ESAS is a feasible tool and was found useful by our caregivers. Further research is needed to modify the ESAS based on caregivers' recommendations, and further psychometric studies need to be conducted.

Financial distress in patients with advanced cancer.

PURPOSE: We examined the frequency and severity of financial distress (FD) and its association with quality of life (QOL) and symptoms among patients with advanced cancer in France. DESIGN: In this cross-sectional study, 143 patients with advanced cancer were enrolled. QOL was assessed using the Functional Assessment of Cancer General (FACT-G) and symptoms assessed using Edmonton Assessment System (ESAS) and Hospital Anxiety and Depression Scale (HADS). FD was assessed using a self-rated numeric scale from 0 to 10. RESULTS: Seventy-three (51%) patients reported having FD. Patients reported having FD were most likely to be younger (53.8 (16,7SD) versus 62 (10.5SD), p<0.001), single (33 (62%) versus 40(44%), p = 0.03) and had a breast cancer (26 (36%), p = 0.024). Patients with FD had a lower FACT-G score (59 versus 70, p = 0.005). FD decreased physical (14 versus 18, p = 0.008), emotional (14 versus 16, p = 0.008), social wellbeing (17 versus 19, p = 0.04). Patients with FD had higher HADS-D (8 versus 6 p = 0.007) and HADS-A (9 versus 7, p = 0.009) scores. FD was linked to increased ESAS score (59 (18SD) versus 67 (18SD), p = 0.005) and spiritual suffering (22(29SD) versus 13(23SD), p = 0.045). CONCLUSION: The high rate of patient-reported FD was unexpected in our studied population, as the French National Health Insurance covers specific cancer treatments. The FD was associated with a poorer quality of life. Having a systematic assessment, with a simple tool, should lead to future research on interventions that will increase patients' QOL.

Financial Distress and Its Associations With Physical and Emotional Symptoms and Quality of Life Among Advanced Cancer Patients.

OBJECTIVE: There are limited data on the effects of financial distress (FD) on overall suffering and quality of life (QOL) of patients with advanced cancer (AdCa). In this cross-sectional study, we examined the frequency of FD and its correlates in AdCa. PATIENTS AND METHODS: We interviewed 149 patients, 77 at a comprehensive cancer center (CCC) and 72 at a general public hospital (GPH). AdCa completed a self-rated FD (subjective experience of distress attributed to financial problems) numeric rating scale (0 = best, 10 = worst) and validated questionnaires assessing symptoms (Edmonton Symptom Assessment System [ESAS]), psychosocial distress (Hospital Anxiety and Depression Scale [HADS]), and QOL (Functional Assessment of Cancer Therapy-General [FACT-G]). RESULTS: The patients' median age was 60 years (95% confidence interval [CI]: 58.6-61.5 years); 74 (50%) were female; 48 of 77 at CCC (62%) versus 13 of 72 at GPH (18%) were white; 21 of 77 (27%) versus 32 of 72 (38%) at CCC and GPH, respectively, were black; and 7 of 77 (9%) versus 27 of 72 (38%) at CCC and GPH, respectively, were Hispanic (p < .0001). FD was present in 65 of 75 at CCC (86%; 95% CI: 76%-93%) versus 65 of 72 at GPH (90%; 95% CI: 81%-96%; p = .45). The median intensity of FD at CCC and GPH was 4 (interquartile range [IQR]: 1-7) versus 8 (IQR: 3-10), respectively (p = .0003). FD was reported as more severe than physical distress, distress about physical functioning, social/family distress, and emotional distress by 45 (30%), 46 (31%), 64 (43%), and 55 (37%) AdCa, respectively (all significantly worse for patients at GPH) (p < .05). AdCa reported that FD was affecting their general well-being (0 = not at all, 10 = very much) with a median score of 5 (IQR: 1-8). FD correlated (Spearman correlation) with FACT-G (r = -0.23, p = .0057); HADS-anxiety (r = .27, p = .0014), ESAS-anxiety (r = .2, p = .0151), and ESAS-depression (r = .18, p = .0336). CONCLUSION: FD was very frequent in both groups, but median intensity was double among GPH patients. More than 30% of AdCa rated FD to be more severe than physical, family, and emotional distress. More research is needed to better characterize FD and its correlates in AdCa and possible interventions. IMPLICATIONS FOR PRACTICE: Financial distress is an important and common factor contributing to the suffering of advanced cancer patients and their caregivers. It should be suspected in patients with persistent, refractory symptom expression. Early identification, measurement, and documentation will allow clinical teams to develop interventions to improve financial distress and its impact on quality of life of advanced cancer patients.

Association between hypogonadism, symptom burden, and survival in male patients with advanced cancer.

BACKGROUND: A high frequency of hypogonadism has been reported in male patients with advanced cancer. The current study was performed to evaluate the association between low testosterone levels, symptom burden, and survival in male patients with cancer. METHODS: Of 131 consecutive male patients with cancer, 119 (91%) had an endocrine evaluation of total (TT), free (FT), and bioavailable testosterone (BT); high-sensitivity C-reactive protein (CRP); vitamin B12; thyroid-stimulating hormone; 25-hydroxy vitamin D; and cortisol levels when presenting with symptoms of fatigue and/or anorexia-cachexia. Symptoms were evaluated by the Edmonton Symptom Assessment Scale. The authors examined the correlation using the Spearman test and survival with the log-rank test and Cox regression analysis. RESULTS: The median age of the patients was 64 years; the majority of patients were white (85 patients; 71%). The median TT level was 209 ng/dL (normal: ≥ 200 ng/dL), the median FT was 4.4 ng/dL (normal: ≥ 9 ng/dL), and the median BT was 22.0 ng/dL (normal: ≥ 61 ng/dL). Low TT, FT, and BT values were all associated with worse fatigue (P ≤ .04), poor Eastern Cooperative Oncology Group performance status (P ≤ .05), weight loss (P ≤ .01), and opioid use (P ≤ .005). Low TT and FT were associated with increased anxiety (P ≤ .04), a decreased feeling of well-being (P ≤ .04), and increased dyspnea (P ≤ .05), whereas low BT was only found to be associated with anorexia (P = .05). Decreased TT, FT, and BT values were all found to be significantly associated with elevated CRP and low albumin and hemoglobin. On multivariate analysis, decreased survival was associated with low TT (hazards ratio [HR], 1.66; P = .034), declining Eastern Cooperative Oncology Group performance status (HR, 1.55; P = .004), high CRP (HR, 3.28; P < .001), and decreased albumin (HR, 2.52; P < .001). CONCLUSIONS: In male patients with cancer, low testosterone levels were associated with systemic inflammation, weight loss, increased symptom burden, and decreased survival. A high frequency of hypogonadism has been reported in male patients with advanced cancer. In the current study, an increased symptom burden, systemic inflammation, weight loss, opioid use, and poor survival were found to be associated with decreased testosterone levels in male patients with cancer. Cancer 2014;120:1586-1593. © 2014 American Cancer Society.

A multicenter survey of Hispanic caregiver preferences for patient decision control in the United States and Latin America.

BACKGROUND: Understanding family caregivers' decisional role preferences is important for communication, quality of care, and patient and family satisfaction. The family caregiver has an important role in a patient's decisional role preferences. There are limited studies on family caregivers' preferences of the patient's decision control at the end of life among Hispanics. AIMS: To identify Hispanic caregivers' preferences of the decision control of patients with advanced cancer and to compare the preferences of caregivers in Hispanic Latin American and Hispanic American caregivers. DESIGN: We surveyed patients and their family caregivers referred to outpatient palliative care clinics in the United States, Chile, Argentina, and Guatemala. Caregiver preferences of patient's decision control were evaluated using the Control Preference Scale. Caregivers' and patients' sociodemographic variables, patient performance status, and Hispanic American patient acculturation level were also collected. PARTICIPANTS: A total of 387 caregivers were surveyed: 100 (26%) in Chile, 99 (26%) in Argentina, 97 (25%) in Guatemala, and 91 (24%) in the United States. The median age was 56 years, and 59% were female. RESULTS: Caregiver preference of patient's decision control was passive, shared, and active for 10 (11%), 45 (52%), and 32 (37%) Hispanic American caregivers and 54 (19%), 178 (62%), and 55 (19%) Hispanic Latin American caregivers (p = 0.0023), respectively. Caregiver acculturation level did not affect the preferences of the Hispanic American sample (p = 0.60). CONCLUSIONS: Most Hispanic family caregivers preferred the patient to make shared decisions. Hispanic Latin American caregivers more frequently preferred patients to assume a passive decisional role. Acculturation did not influence the preferences of Hispanic American caregivers.

Alcoholism screening in patients with advanced cancer: impact on symptom burden and opioid use.

PURPOSE: Alcoholism is a devastating disease that can cause patient and family suffering and is frequently underdiagnosed. Preliminary studies suggest that it is associated with increased symptom expression and opioid dose escalation. The CAGE questionnaire is a widely used tool for alcoholism screening. The purpose of this study was to determine the frequency and characteristics of patients who screen positive for alcoholism in a palliative care outpatient clinic (PCOC). METHODS: We reviewed 665 consecutive charts of patients referred to the PCOC and collected data regarding age, gender, and type of cancer. For the first 100 consecutive CAGE positive (CAGE+) and 100 consecutive CAGE negative (CAGE-) patients, time from advanced cancer diagnosis (AC) to PCOC was calculated, and symptoms (Edmonton Symptom Assessment Scale, ESAS) and Morphine Equivalent Daily Dose (MEDD) were collected. RESULTS: CAGE was available for 598 of 665 (90%) patients. Of 598 patients, 100 (17%) were CAGE+. CAGE+ patients were younger (58 versus 60 years, p < 0.05), predominantly male (68% versus 47%, p < 0.0001), and with head/neck malignancies (24% versus 9%, p < 0.05). CAGE+ patients were referred earlier (5 +/- 27 months after AC, p < 0.0001). At baseline, pain, sleep, dyspnea, well-being, and total symptom distress were significantly worse among CAGE+ patients. Both groups showed similar improvement in symptoms. CAGE+ patients were more frequently on opioids upon referral (47/100 versus 29/100, p < 0.05) and follow-up (27/65 versus 16/68, p < 0.05). At follow-up, opioid doses did not show significant changes. CONCLUSION: Seventeen percent of the patients were CAGE+. These patients were referred earlier to palliative care, had more symptom expression, and were more frequently on opioids. The palliative care team successfully improved symptom control in both groups without opioid dose escalation.