CancerSupportSource-Spanish: Development of a Distress Screening Measure for Spanish-Speaking Hispanic and Latino Individuals with Cancer.

Introduction: CancerSupportSource (CSS), a distress screening and referral program, identifies unmet needs of people with cancer and links them to resources and support. We developed and validated a Spanish-language version (CSS-Spanish) to better serve Hispanic and Latino communities and promote health equity. Methods: The 25-item CSS-Spanish was created leveraging rigorous translation methods and cognitive interviews to ensure cultural relevance and topical breadth. A total of 210 Spanish-speaking Hispanic and Latino individuals completed CSS-Spanish and comparison measures. Psychometric analyses examined dimensionality and statistical validation, and determined scoring thresholds for depression and anxiety risk subscales. Results: CSS-Spanish represented key concerns across five factors and exhibited strong internal consistency and test-retest reliability, convergent validity, and known-groups validity. Risk subscales demonstrated adequate sensitivity. Conclusion: CSS-Spanish is a reliable, valid multidimensional distress screener that rapidly assesses needs of Hispanic and Latino individuals. Embedded depression and anxiety risk flags can support staff in identifying those with high-acuity needs.

HIV Support Source: Development of a Distress Screening Measure for Adults with HIV.

To provide an effective, multidimensional, and psychometrically valid measure to screen for distress among people with HIV, we developed and assessed the psychometric properties of HIV Support Source, a distress screening, referral, and support program designed to identify the unmet needs of adults with HIV and link them to desired resources and support. Development and testing were completed in three phases: (1) item generation and initial item pool testing (N = 375), (2) scale refinement via exploratory factor analysis (N = 220); external/internal item quality, and judging theoretical and practical implications of items, and (3) confirmatory validation (N = 150) including confirmatory factor analysis along with reliability and validity analyses to corroborate dimensionality and psychometric properties of the final measure. Nonparametric receiver operating characteristic (ROC) curve analyses determined scoring thresholds for depression and anxiety risk subscales. The final measure comprises 17-items representing four domains of concern: emotional well-being, financial and practical needs, physical well-being, and HIV treatment and sexual health, plus one screening item assessing tobacco and substance use. Our analyses showed strong internal consistency reliability, a replicable factor structure, and adequate convergent, discriminant, and known groups validity. Sensitivity of 2-item depression and 2-item anxiety risk subscales was 0.90 and 0.79, respectively. HIV Support Source is a reliable and valid multidimensional measure of distress that also screens for risk for clinically significant depression and anxiety. It can be implemented within a distress screening, referral, and follow-up program to rapidly assess and support the unmet needs of adults with HIV.

The interplay of financial toxicity, health care team communication, and psychosocial well-being among rural cancer patients and survivors.

BACKGROUND: Financial 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. PURPOSE: We examined associations between financial toxicity and psychosocial well-being among rural cancer patients, exploring variability in these linkages by health care team communication. METHODS: Using 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. RESULTS: We 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. CONCLUSIONS: Financial 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.

CancerSupportSourceTM -Caregiver: Development of a distress screening measure for cancer caregivers.

OBJECTIVE: Given the substantial demands of cancer caregiving, practical and psychometrically sound tools to evaluate distress among cancer caregivers are needed. CancerSupportSourceTM -Caregiver is a distress screening, referral, and support program designed to identify the unmet needs of cancer caregivers and link caregivers to desired resources and support. This study refined and finalized the CancerSupportSource-Caregiver screening measure and examined its psychometric properties. METHODS: Using an analytic sample of 400 caregivers to people with cancer, we first performed item reduction by assessing exploratory factor analysis, external/internal item quality, and judging theoretical and practical implications of items. Confirmatory factor analysis along with reliability and validity analyses were then conducted to corroborate dimensionality and psychometric properties of the final measure. Nonparametric receiver operating characteristic curve analyses determined scoring thresholds for depression and anxiety risk subscales. RESULTS: Scale refinement resulted in an 18-item measure plus one screening item assessing tobacco and substance use. Items represented five domains of caregiver concerns: emotional well-being, patient well-being, caregiving tasks, finances, and healthy lifestyle. Our analyses showed strong internal consistency and test-retest reliability, a replicable factor structure, and adequate convergent, discriminant, and known groups validity. Sensitivity of 2-item depression and 2-item anxiety risk subscales were 0.95 and 0.87, respectively. CONCLUSIONS: CancerSupportSource-Caregiver is a reliable and valid multidimensional measure of caregiver distress that also screens for risk for clinically significant depression and anxiety. It can be implemented within a distress screening, referral, and follow-up program to rapidly assess caregivers' unmet needs and enhance caregiver well-being across the care continuum.

Pain and Nausea Intensity, Social Function, and Psychological Well-Being among Women with Metastatic Breast Cancer.

Advances in diagnostics and therapeutics have improved prognosis for metastatic breast cancer (MBC). Yet, treatment and disease burden-including experiences of pain and nausea-present practical and emotional challenges. To better support patients and enhance quality of life, deeper understanding of the pathways linking physical and psychological health is needed. To this end, we examined associations of pain and nausea with depression and anxiety among women with MBC. In doing so, we highlighted social function as a potentially important mechanism in this relationship. This observational, cross-sectional study included 148 predominantly non-Hispanic White, highly educated women living with MBC. Multivariate regression models demonstrated that more intense pain and nausea were significantly associated with higher levels of depression and anxiety (p < .001). Causal mediation analyses confirmed significant indirect effects whereby decreases in social function associated with pain and nausea contributed to depression and anxiety. Thus, our findings illustrate decreased social function as one pathway through which pain and nausea contribute to escalation of depression and anxiety. Our results, therefore, underscore the importance of supporting social function among women with MBC to potentially reduce psychological sequelae of pain and nausea.

Patient-Reported Communication With Their Health Care Team About New Treatment Options for Chronic Lymphocytic Leukemia.

Chronic lymphocytic leukemia (CLL) often requires consideration of multiple treatment options. Shared decision-making (SDM) is important, given the availability of increasingly novel therapies; however, patient-provider treatment conversations vary. We examined relationships between patient-provider discussions of new CLL treatment options and sociodemographic, clinical, and patient-provider communication variables among 187 CLL patients enrolled in Cancer Support Community's Cancer Experience Registry. Factors significantly associated with self-reports of whether patients' providers discussed new CLL treatment options with them were examined using χ2 tests, t tests, and hierarchical logistic regression. Fifty-eight percent of patients reported discussing new treatment options with their doctor. Patients with higher education were 3 times more likely to discuss new treatment options relative to those with lower education (OR = 3.06, P < .05). Patients who experienced a cancer recurrence were 7 times more likely to discuss new treatment options compared to those who had not (OR = 7.01, P < .05). Findings offer insights into the correlates of patient-provider discussions of new CLL treatment options. As novel therapies are incorporated into standards of care, opportunities exist for providers to improve patient care through enhanced SDM.

CancerSupportSource®-15+: development and evaluation of a short form of a distress screening program for cancer patients and survivors.

PURPOSE: CancerSupportSource® (CSS) is a distress screening program implemented at community-based organizations and hospitals nationwide. The 25-item CSS assesses distress across five domains, with capacity to screen for clinically significant depression and anxiety. This study examined psychometric properties of a shortened form to enhance screening opportunities when staff or patient burden considerations are significant. METHODS: Development and validation were completed in multiple phases. Item reduction decisions were made with 1436 cancer patients by assessing external/internal item quality and judging theoretical and practical implications of items. Pearson correlations and confirmatory factor analysis were conducted on a separate sample of 957 patients to corroborate psychometric properties and dimensionality of the shortened scale. Nonparametric receiver operating characteristic (ROC) curve analyses determined scoring thresholds for depression and anxiety risk scales. RESULTS: Scale refinement resulted in a 15-item short form plus one screening item assessing tobacco and substance use (CSS-15+). At least two items from each CSS domain were retained to preserve multidimensionality. In confirmatory analysis, the model explained 59% of the variance and demonstrated good fit. Correlation between CSS-15+ and 25-item CSS was 0.99, p < 0.001. Sensitivity of 2-item depression and 2-item anxiety risk scales in the confirmatory sample were 0.82 and 0.83, respectively. CONCLUSIONS: CSS-15+ is a brief, reliable, and valid multidimensional measure of distress. The measure retained excellent internal consistency (α = 0.94) and a stable factor structure. CSS-15+ is a practical and efficient screening tool for distress and risk for depression and anxiety among cancer patients and survivors, particularly in community-based settings.

Symptom Burden, Perceived Control, and Quality of Life Among Patients Living With Multiple Myeloma.

BACKGROUND: New therapies for multiple myeloma (MM) have improved survival rates but often expose patients to heightened toxicities and prolonged treatment, leading to increasing complications and side effects. We evaluated the association between symptom burden, perceived control over illness, and quality of life (QoL) among a national sample of patients with MM. METHODS: For this observational, cross-sectional study, we used data from the Cancer Experience Registry research initiative to examine symptom- and functioning-related concerns among 289 patients with MM across the illness trajectory. We applied hierarchical multiple linear regression analyses to explore associations between symptom burden and perceived control over illness with QoL indicators: depression, anxiety, and social satisfaction. RESULTS: In our sample, 73% of participants with MM reported currently receiving treatment; 39% experienced relapse; 56% received 1 to 2 autologous transplants, 10% received ≥3 autologous transplants, and 4% received allogeneic and autologous transplants; 30% had not received a stem cell transplant. Average time since diagnosis was 4.4 years. The most highly endorsed concerns included eating and nutrition (61%), physical activity (59%), moving around (56%), fatigue (55%), pain (52%), and sleep (46%). Only 27% believed they had control over their disease, whereas 48% perceived having control over the physical side effects of MM. Approximately one-third of the variance in anxiety and depression and nearly two-thirds of variance in social satisfaction were explained by sociodemographic, clinical, and symptom burden variables. Perceived control over illness significantly predicted depression and anxiety, but not social satisfaction. Our results highlight substantial concern among patients with MM about physical symptoms and function. Additionally, greater symptom burden significantly accounted for poorer QoL, and lower perceived control over illness was linked to depression and anxiety. CONCLUSIONS: Patients with MM and survivors experience substantive long-term QoL issues. Together, these findings point to the critical need for comprehensive symptom management, integrated palliative care, and enhancement of social and emotional support for individuals with MM.

Adolescent Sleep Barriers: Profiles within a Diverse Sample of Urban Youth.

Most adolescents face numerous obstacles to good sleep, which may undermine healthy development. In this study, we used latent class analysis and identified four categories of sleep barriers in a diverse sample of 553 urban youth (57% female). The majority profile, School/Screens Barriers, reported the most homework and extracurricular barriers, along with high screen time. The Home/Screens Barriers class (i.e., high environmental noise, light, screen use) and the High/Social Barriers class (i.e., high barriers across domains, particularly social) reported the poorest sleep quality and highest depressive/anxiety symptoms. The Minimal Barriers class-predominately male, with low depressive/anxiety symptoms-reported more sleep per night. We discuss implications of our findings for targeting interventions to address poor adolescent sleep among specific clusters of students.