Survivorship concerns among individuals diagnosed with metastatic cancer: Findings from the Cancer Experience Registry.

INTRODUCTION: Individuals with metastatic cancer experience many medical, physical, and emotional challenges due to changing medical regimens, oscillating disease states, and side effects. The purpose of this study was to describe the type and prevalence of survivorship concerns reported by individuals with metastatic cancer, and their associations with cancer diagnosis, treatment, and socio-demographic variables. METHODS: This study utilized data from the Cancer Support Community's Cancer Experience Registry. Individuals were included if they self-reported a solid tumor metastatic cancer and completed CancerSupportSource, which evaluates five domains of concerns (emotional well-being, symptom burden, body image/healthy lifestyle, healthcare team communication, and relationships/intimacy). Multivariable linear regression examined associations between independent predictors of each survivorship concern domain. RESULTS: Of the 403 included participants, individuals reported a metastatic diagnosis of breast (43%), colorectal (20%), prostate (7%), lung (7%), gynecologic cancer (6%) and other. Nearly all (96%) reported at least one survivorship concern, with the most prevalent concern about cancer progression or recurrence. Survivorship concerns were higher across multiple domains for individuals unemployed due to disability. Individuals who were less than five years since diagnosis reported higher concerns related to emotional well-being, symptom burden, and healthcare communication compared to those more than five years since diagnosis. CONCLUSION: Individuals with metastatic cancer experience a variety of moderate-to-severe survivorship concerns that warrant additional investigation. IMPLICATIONS FOR CANCER SURVIVORS: As the population of individuals with metastatic cancer lives longer, future research must investigate solutions to address modifiable factors associated with survivorship concerns, such as unemployment due to disability.

A randomized controlled trial of a distress screening, consultation, and targeted referral system for family caregivers in oncologic care.

OBJECTIVE: Distress screening is standard practice among oncology patients, yet few routine distress screening programs exist for cancer caregivers. The objective of this study was to demonstrate the feasibility, acceptability, and preliminary efficacy of Cancer Support Source-CaregiverTM (CSS-CG, 33-item), an electronic distress screening and automated referral program with a consultation (S + C) to improve caregiver unmet needs, quality of life, anxiety, depression, and distress relative to Enhanced Usual Care (EUC; access to educational materials). METHOD: 150 caregivers of patients with varying sites/stages of cancer were randomized to S + C or EUC and completed assessments at baseline, 3-months post-baseline, and 6-months post-baseline. A subset of participants (n = 10) completed in-depth qualitative interviews. RESULTS: S + C was feasible: among 75 caregivers randomized to S + C, 66 (88%) completed CSS-CG and consultation. Top concerns reported were: (1) patient's pain and/or physical discomfort; (2) patient's cancer progressing/recurring; and (3) feeling nervous or afraid. Differences between groups in improvements on outcomes by T2 and T3 were modest (ds < 0.53) in favor of S + C. Qualitative data underscored the helpfulness of S + C in connecting caregivers to support and helping them feel cared for and integrated into cancer care. CONCLUSIONS: S + C is feasible, acceptable, and yields more positive impact on emotional well-being than usual care. Future studies will examine programmatic impact among caregivers experiencing higher acuity of needs, and benefits of earlier integration of S + C on caregiver, patient, and healthcare system outcomes.

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.

Financial toxicity among people with metastatic cancer: findings from the Cancer Experience Registry.

PURPOSE: This study describes financial toxicity (FT) reported by people with metastatic cancer, characteristics associated with FT, and associations between FT and compensatory strategies to offset costs. METHODS: Cancer Support Community's Cancer Experience Registry data was used to identify respondents with a solid tumor metastatic cancer who completed the Functional Assessment of Chronic Illness Therapy COmprehensive Score for Financial Toxicity (FACIT-COST) measure. Multivariable logistic regression analyses examined associations between respondent characteristics and FT, and FT and postponing medical visits, nonadherence to medications, and postponing supportive and/or psychosocial care. RESULTS: 484 individuals were included in the analysis; the most common cancers included metastatic breast (31%), lung (13%), gynecologic (10%), and colorectal (9%). Approximately half of participants (50.2%) reported some degree of FT. Those who were non-Hispanic White, Hispanic, or multiple races (compared to non-Hispanic Black), and who reported lower income, less education, and being less than one year since their cancer diagnosis had greater odds of reporting FT. Individuals with any level of FT were also more likely to report postponing medical visits (Adjusted Odds Ratio [OR] 2.58; 95% Confidence Interval [CI] 1.45-4.58), suboptimal medication adherence (Adjusted OR 5.05; 95% CI 2.77-9.20) and postponing supportive care and/or psychosocial support services (Adjusted OR 4.16; 95% CI 2.53-6.85) compared to those without FT. CONCLUSIONS: With increases in the number of people living longer with metastatic cancer and the rising costs of therapy, there will continue to be a need to systematically screen and intervene to prevent and mitigate FT for these survivors.

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.

Valued Outcomes in the Cancer Experience (VOICE)™: Development and validation of a multidimensional measure of perceived control.

OBJECTIVE: Enhancing cancer patients' sense of control can positively impact psychological well-being. We developed and assessed the psychometric properties of Valued Outcomes in the Cancer Experience (VOICE)TM, a measure of patients' perceived control over key personal priorities within their cancer experience. METHODS: VOICE construction and testing were completed in three phases with separate participant samples: (1) item generation and initial item pool testing (N = 459), (2) scale refinement (N = 623), and (3) confirmatory validation (N = 515). RESULTS: A 21-item measure was developed that captures cancer patients' sense of control in seven key domains: (1) Purpose and Meaning, (2) Functional Capacity, (3) Longevity, (4) Quality Care, (5) Illness Knowledge, (6) Social Support, and (7) Financial Capability. VOICE demonstrated adequate internal consistency (full-scale α = 0.93; factor α = 0.67-0.89) and adequate to strong convergent and discriminatory validity. SIGNIFICANCE OF RESULTS: VOICE measures cancer patients' perceived control across a diverse range of personal priorities, creating a platform for elevating patient perspectives and identifying pathways to enhance patient well-being. VOICE is positioned to guide understanding of the patient experience and aid the development and evaluation of supportive care interventions to enhance well-being.

The psychometric properties of a caregiving-related strain scale in oncology.

BACKGROUND: Caregivers are rarely assessed for caregiving-related strain. This study explored the psychometric properties of the caregiving-related physical, emotional, and financial strain questions in the National Alliance for Caregiving's (NAC) survey and a new total score (NAC-3). METHODS: Comparisons were made to existing caregiver quality of life, distress, and burden instruments through an online, cross-sectional survey of U.S. adult cancer caregivers. RESULTS: Findings from 299 caregivers showed that the NAC-3 was moderately to strongly associated with each of the comparison instruments. Similar concepts were also shown to be more strongly correlated (except physical health construct) and dissimilar concepts items had weaker correlations. CONCLUSION: Findings suggest that the total score and individual items are psychometrically sound for use as compared to established caregiving-related instruments. The total score and items provide a concise option, potentially beneficial for clinical use, and can be compared to nationally representative samples of caregivers through NAC's surveys.

The Effect of Frailty on Walking Recovery After Hip Fracture: A Secondary Analysis of the Community Ambulation Project.

BACKGROUND: The impact of frailty on walking recovery after hip fracture has not been reported. We describe the prevalence of frailty approximately 3 months after hip fracture, and identify the impact of baseline frailty on ambulation recovery. METHODS: Data from the Community Ambulation Project, that examined the effects of 2 multicomponent home exercise programs on 6-minute walk test in participants post hip fracture, were used to reconstruct the 5-item frailty phenotype. We detailed the prevalence of frailty by subgroup and assessed the comparability between frailty groups for the categorical variable of achieving 300 m in 6-minute walk test (community ambulation threshold), and the continuous variable of total distance in 6-minute walk test before and after 16 weeks of intervention. RESULTS: Of the 210 participants, 9% were nonfrail, 59% were prefrail, and 32% were frail. The odds of a nonfrail participant achieving the 300-m threshold were 14.4 (95% CI: 2.4-87.6) times the odds of a frail participant, while a prefrail participant's odds were 6.1 (95% CI: 1.3-28.4) times after controlling for treatment group and baseline walking distance. The nonfrail participants had an increase of 92.1 m from baseline to 16 weeks, the prefrail had a 50.8 m increase, and the frail group had the smallest increase of 36.6 m (p < .001 for all). CONCLUSIONS: Prefrailty and frailty were highly prevalent in this sample of community-dwelling survivors of a recent hip fracture. Gains in walking distance and attaining a level of community ambulation were affected significantly by the level of baseline frailty.

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.

Racial and ethnic variations in caregiving-related physical, emotional, and financial strain during COVID-19 among those caring for adult cancer patients.

PURPOSE: Cancer caregiving is shown to be a burdensome experience in typical times. The purpose of this study was to describe cancer caregivers' emotional, physical, and financial strain during the COVID-19 pandemic and compared to preCOVID-19, and explore racial and ethnic variations in caregiver strain. METHODS: We conducted a cross-sectional online survey using Lucid, LLC, incorporating quotas for race, ethnicity, gender and age. Caregivers had to be adults living in the USA and currently providing unpaid care to an adult cancer patient (i.e., during COVID-19) and prior to the pandemic. We assessed the caregivers' emotional, physical, and financial strain and asked them to compare to preCOVID-19 caregiving. Analyses included descriptive and linear regression adjusting for sociodemographic and caregiving-related variables. RESULTS: A total of 285 caregivers met eligibility, and most were nonHispanic white (72.3%) and female (59.6%). Based on a scale of "1: Much lower" to "5: Much higher", the financial, physical and emotional strain/stress experienced by caregivers compared to preCOVID-19 was, on average, 3.52 (SD: 0.82; range: 1-5) for financial strain, 3.61 (SD: 0.86; range: 1-5) for physical strain, and 3.88 (SD: 0.89; range: 1-5) for emotional stress. NonHispanic black caregivers were significantly more likely than nonHispanic white caregivers to indicate that caregiving-related financial strain was higher than preCOVID-19. Moreover, Hispanic caregivers compared to nonHispanic white caregivers reported caregiving-related emotional stress was higher than preCOVID-19. CONCLUSION: These findings suggest a need to be attentive to racial and ethnic variations in emotional and financial strain and provide targeted support in clinical care and via public policy during a public health crisis.

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.

CancerSupportSource®: validation of a revised multi-dimensional distress screening program for cancer patients and survivors.

PURPOSE: To facilitate access to and provision of psychosocial care to cancer patients in the community, the Cancer Support Community (CSC) developed CancerSupportSource® (CSS), an evidence-based psychosocial distress screening program. The current study examined the psychometric properties and multi-dimensionality of a revised 25-item version of CSS, and evaluated the scale's ability to identify individuals at risk for clinically significant levels of depression and anxiety. METHODS: CSS development and validation were completed in multiple phases. Exploratory factor analysis was completed with 1436 individuals diagnosed with cancer to examine scale dimensionality, and nonparametric receiver operating characteristic (ROC) curve analyses were used to determine scoring thresholds for depression and anxiety risk scales. Internal consistency reliability and convergent and discriminant validity were also examined. Confirmatory factor analysis and intraclass correlation coefficients were subsequently calculated with a separate sample of 1167 individuals to verify the scale factor structure and examine test-retest reliability. RESULTS: Five factors were identified and confirmed: (1) emotional well-being, (2) symptom burden and impact, (3) body image and healthy lifestyle, (4) health care team communication, and (5) relationships and intimacy. Psychometric evaluation of the total scale and factors revealed strong internal consistency reliability, test-retest reliability, and convergent and divergent validity. Sensitivity of CSS 2-item depression and 2-item anxiety risk scales were .91 and .92, respectively. CONCLUSIONS: Results indicate that CancerSupportSource is a reliable, valid, multi-dimensional distress screening program with the capacity to screen for those at risk for clinically significant levels of depression and anxiety.

Reducing informal caregiver burden in cancer: evidence-based programs in practice.

Caring for people with cancer can be a burdensome and emotionally straining experience. Without adequate psychosocial support, distressed caregivers are at risk for psychiatric and medical morbidity, which can adversely affect patient outcomes. Although there is a tremendous need to provide effective and timely supportive care services for cancer caregivers, few community or clinically based services exist and the needs of these essential caregivers are profoundly underserved. This article describes three existing evidence-based programs and tools that address the needs of family caregivers of cancer patients: (a) the FOCUS Program, tested for efficacy in prior randomized clinical trials and implemented in community settings by agency staff; (b) the Program for the Study of Cancer Caregivers at Memorial Sloan Kettering Cancer Center (MSKCC), which addresses the needs of caregivers in a large health care system; and (c) CancerSupportSource®-Caregiver, an online platform for distress screening and referral developed by the Cancer Support Community to assess and address caregivers' needs. We also describe next steps related to broader dissemination for practitioners considering how best to support cancer caregivers now and in the future. Although each evidence-based program or tool represents a unique approach to supporting caregivers, together these approaches allow for a greater likelihood of meeting caregiver needs across a variety of contexts. Collaboration within and across organizations allowed for the development and effective implementation of each of the described initiatives.

The need for decision and communication aids: a survey of breast cancer survivors.

BACKGROUND: Qualitative studies have identified barriers to communication and informed decision making among breast cancer survivors making treatment decisions. The prevalence of these barriers is unknown. OBJECTIVE: To quantify the need for decision support among breast cancer survivors. METHODS: We surveyed 2,521 breast cancer survivors participating in an online registry hosted by the Cancer Support Community to find out what proportion of breast cancer patients: made decisions during their first visit with a specialist; received satisfactory information before that visit; asked questions and received responses; and endorsed expanded use of decision support. RESULTS: We received 1,017 (41%) responses and analyzed 917 surveys from women who lived in the United States. Most of the respondents recalled making treatment decisions during their first visit (52%). A minority (14%) received information before the first specialist visit. At least 25% of respondents rated their satisfaction below 7 on a scale of 10 for decision-making, information, and questions asked and answered. Respondents endorsed the need for assistance with obtaining information, listing questions, taking notes, and making audio-recordings of visits. LIMITATIONS: The respondent sample skewed younger and had higher-stage cancer compared with all breast cancer survivors. Responses were subject to recall bias. CONCLUSIONS: Cancer survivors expressed gaps in their care with respect to reviewing information, asking questions, obtaining answers, and making decisions. Implementing decision and communication aids immediately upon diagnosis, when treatment decisions are being made, would address these gaps.

Discriminatory power of a 25-item distress screening tool: a cross-sectional survey of 251 cancer survivors.

OBJECTIVE: The objective was to test the discriminatory power of a 25-item distress screening tool for use among cancer survivors. We used a measure of item discrimination to determine which items perform better than others at identifying those at greatest risk of distress. METHODS: A total of 251 members (90 % female, median age 57 years) of a community-based cancer support organization completed a web-based distress screening tool. Participants were asked to rate each of 25 items according to the question "Today, how concerned are you about…?" using a five-point Likert scale (0 not at all to 4 very seriously concerned). An overall distress score was calculated as the sum of items rated at or above two for somewhat concerned. Participants were categorized as high scorers (≥13, n = 59) and low scorers (≤4, n = 60). The item discrimination index (IDI) was calculated for each item as the percentage difference in concerned (somewhat or greater) responses between high and low scorers. RESULTS: Items with the greatest discriminatory power (IDI ≥0.8) were as follows: changes or disruptions in work, school or home life; feeling sad or depressed; feeling too tired to do the things you need or want to do; worrying about the future and what lies ahead; and feeling nervous or afraid. Conversely, items with the lowest IDI included considering taking your own life; eating and nutrition; tobacco or substance use; and transportation to treatment and appointments. CONCLUSION: The results highlight, among 25 items of a community-based distress screening tool, items with the greatest discriminatory power to identify cancer survivors with psychosocial distress. Results suggest targeted screening items to identify those most at risk for distress and priority areas for support services.

Predictors of use of complementary and alternative medicine by non-hodgkin lymphoma survivors and relationship to quality of life.

HYPOTHESES: This study hypothesized that non-Hodgkin lymphoma (NHL) patients who used complementary and alternative medicine (CAM) would have higher health-related quality of life (HRQOL) and a greater perceived sense of control than nonusers. However, since CAM may predict HRQOL, and perceived control may be both associated with CAM use as well as being an independent predictor of HRQOL, the authors also sought to test whether perceived control mediated the relationship between CAM use and HRQOL. STUDY DESIGN: This was a cross-sectional study design. NHL survivors diagnosed between June 1, 1998 and August 31, 2001 were selected from the population-based SEER (Surveillance, Epidemiology, and End Results) cancer registry for Los Angeles County and were mailed a survey in 2003 that assessed CAM use and predictors of CAM use. The response rate was 54.8%; 319 provided complete data for analysis. METHODS: Categories of CAM were defined according to the National Center for Complementary and Alternative Medicine guidelines. The authors measured survivors' cancer-related control using the Perceived Personal Control scale, a 4-question scale that was adapted from previously validated scales. HRQOL was measured using the mental component summary and physical component summary scores from the SF-36 v2.0. Bivariate and multivariable logistic and linear regression models were used to assess factors associated with CAM use and the association of CAM use with psychosocial health outcomes, respectively. RESULTS: Sixty-one percent of respondents reported using at least one CAM modality within the past 4 weeks, and 40% did so after excluding personal prayer and support groups. Younger age and higher education were significantly associated with greater CAM use as were higher perception of cancer-related control (P = .004) and more positive mental functioning (P = .016). Perception of control significantly mediated the association between CAM use and mental functioning (P < .001). CONCLUSIONS: CAM use may be related to more positive mental health-related quality of life by increasing patients' perception of perceived control over their health; however, cause and effect cannot be determined. Physicians should be aware that cancer survivors have a need to take an active role in improving their health.

Demonstrating the psychometric properties of a problem-related distress screener in a community sample of 319 cancer survivors.

OBJECTIVE: The purpose was to test the psychometric properties of a 36-item community-based problem-related distress screening tool, among 319 cancer survivors recruited across 14 affiliates of the Cancer Support Community. METHODS: Internal reliability was estimated using Cronbach's alpha coefficient. Test-retest reliability was assessed using the intra-class correlation coefficient (ICC). Concurrent validity was determined by correlations with the Functional Assessment of Cancer Therapy-General Well-Being Scale (FACT-G), the Center for Epidemiologic Studies Depression Scale (CES-D), and the Distress Thermometer (DT) and receiver operating characteristic (ROC) curve analysis using the CES-D (≥16) and DT (≥4) as the criterion. Non-parametric analysis of variance was used to establish discriminant validity. RESULTS: The distress screener demonstrated high internal consistency (Cronbach's alpha = 0.91) and strong test-retest reliability (ICC ≥ 0.75). Summary scores of the distress screener correlated substantially with the FACT-G (R(2) = 0.58, p < 0.001), CES-D (R(2) = 0.48, p < 0.001), and DT (R(2) = 0.35, p < 0.001) indicating strong concurrent validity and were able to discriminate groups of clinical relevance. ROC analyses showed a cutoff score of 8 for problem items rated ≥3 had optimal sensitivity and specificity relative to the CES-D and DT. CONCLUSIONS: The distress screener shows strong psychometric properties and can be considered a valuable community-based instrument to screen for psychological distress related to social, emotional, physical, and other patient-related symptoms and problems. This study is the first to address the chasm between hospital and community-based screening by validating a community-based instrument and has begun to demonstrate the feasibility of screening in the community.

Role of religiosity and spirituality in complementary and alternative medicine use among cancer survivors in California.

OBJECTIVES: Cancer survivors often turn to religion, spirituality, and complementary and alternative medicine (CAM) because they perceive these areas as being more holistic and patient-centered than conventional medicine. Because increased religiosity and spirituality have been found to be associated with higher CAM use in the general population, it was hypothesized that these factors would be important predictors of CAM use in cancer survivors. DESIGN AND SUBJECTS: The study included a subsample of 1844 people with cancer or a history of cancer from the 2003 California Health Interview Survey of CAM, a cross-sectional survey of a population-based sample of adults in California. Prevalence and predictors of religious/spiritual forms of CAM (R/S CAM) and nonreligious/nonspiritual forms of CAM (non-R/S CAM) were compared. Multivariate logistic regression was used to identify the predictors of R/S CAM and non-R/S CAM. RESULTS: Nearly two thirds of participants reported using at least 1 type of R/S CAM, and 85% reported ever using non-R/S CAM. The majority of cancer survivors reported that they were very/moderately religious or spiritual. Both religiosity and spirituality were strongly related to non-R/S CAM use, but in opposite directions. Very or moderately religious cancer survivors were less likely (odds ratio=0.30; 95% confidence interval, 0.12-0.40) than nonreligious cancer survivors to use non-R/S CAM. In contrast, very or moderately spiritual cancer survivors were more likely (odds ratio=2.42; 95% confidence interval, 1.16-6.02) than nonspiritual cancer survivors to use non-R/S CAM. CONCLUSIONS: The use of R/S CAM and non-R/S CAM is very high in cancer survivors. It may be helpful for clinicians to ascertain their patients' use of these types of CAM to integrate all forms of care used to managing their cancer.

Religious and spiritual practices and identification among individuals living with cancer and other chronic disease.

Religion and spirituality in the context of health care are poorly understood, particularly for individuals with chronic illness. Using data from the 2003 Complementary and Alternative Medicine supplement to the 2001 California Health Interview Survey, we examined whether cancer survivors (n = 1,777) and individuals with other chronic illnesses (n = 4,784) were either more likely to identify themselves as religious and spiritual or more likely to use religious and spiritual practices for health purposes than individuals with no disease (n = 2,342). We observed that cancer survivors and individuals with chronic illnesses were more likely than those with no disease to use religious and spiritual prayer and healing practices. Individuals with chronic diseases were not inherently more likely to identify themselves as religious than were healthy individuals and were only slightly more likely to identify themselves as spiritual. These findings indicate that individuals with cancer and other chronic illnesses may be using religious and spiritual practices as a way to cope with their illness. Future research should continue to examine whether and how religious and spiritual practices are used as complementary or alternative medicine, and health care professionals should ask their patients about such use.