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  • 1
    Online Resource
    Online Resource
    American Society of Clinical Oncology (ASCO) ; 2019
    In:  Journal of Clinical Oncology Vol. 37, No. 7_suppl ( 2019-03-01), p. 41-41
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 37, No. 7_suppl ( 2019-03-01), p. 41-41
    Abstract: 41 Background: Due to side effects of invasive treatments, prostate cancer (PC) patients face long-term quality of life (QoL) concerns and enduring psychosocial distress. We explored how QoL is linked to distress among a national sample of men with PC. Methods: 214 men with PC enrolled in the Cancer Support Community’s Cancer Experience Registry. Participants provided demographic/clinical background and completed the Prostate Cancer-Related QoL Scales, covering 6 QoL domains ( urinary control, sexual intimacy, sexual confidence, masculine self-esteem, cancer control, and treatment regret). Psychosocial distress was captured by CancerSupportSource, a 25-item tool with 2-item depression and anxiety screening subscales. Scores ≥3 indicate risk for clinically significant depression or anxiety respectively, and signal need for referral and further assessment. We examined bivariate correlations between demographic/clinical background, QoL, and prevalence of ‘risk for clinically significant anxiety and depression’, and used logistic regression to calculate odds of anxiety and depression risk by QoL, adjusting for demographic/clinical variables. Results: Participants were 93% White; mean ( SD) age=64 (12) years; mean ( SD) years since diagnosis=4.3 (4.9); 25% had metastatic disease. 54% underwent radiation; 55% surgery. 40% were at risk for clinically significant anxiety; 35% depression. Poorer QoL scores for sexual intimacy, sexual confidence, masculine self-esteem, cancer control, and treatment regret were bivariately associated with anxiety ( p 〈 .05) and depression ( p 〈 .001) risk. In logistic regression, poorer perceived cancer control predicted anxiety risk (R 2 =.44; OR=0.97; p 〈 .01). Lower masculine self-esteem predicted depression risk (R 2 =.68; OR=0.88; p 〈 .05). Conclusions: Questioning treatment efficacy and worrying about disease progression (i.e., lower perceived cancer control) predicts greater likelihood of anxiety risk. Lower masculine self-esteem predicts odds of depression risk. These findings elucidate the ways that PC patients’ perceptions of advancing disease and diminishing masculinity are linked to distress, thus identifying areas for psycho-educational and supportive interventions.
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
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    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2019
    detail.hit.zdb_id: 2005181-5
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  • 2
    Online Resource
    Online Resource
    American Society of Clinical Oncology (ASCO) ; 2019
    In:  Journal of Clinical Oncology Vol. 37, No. 15_suppl ( 2019-05-20), p. e23136-e23136
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 37, No. 15_suppl ( 2019-05-20), p. e23136-e23136
    Abstract: e23136 Background: Lung cancer (LC) patients can face long-term symptom burden, quality of life concerns, and enduring distress. This study explored predictors of psychosocial distress among a community-based sample of LC survivors. Methods: 208 individuals with LC enrolled in Cancer Support Community’s Cancer Experience Registry, provided demographic/clinical background, and reported cancer-related distress using CancerSupportSource, a 25-item tool measuring level of concern ( 0-4) over 5 domains: emotional well-being (including 2-item depression and 2-item anxiety risk screening subscales), symptom burden and impact, body image and healthy lifestyle, health care team communication (HCTC), and relationships and intimacy. Using logistic regression, we estimate which domains influence anxiety and depression risk, controlling for significant demographic/clinical variables. Results: Participants were 68% female, 83% non-Hispanic White; mean ( SD) age = 61 (11) years; mean ( SD) years since diagnosis = 3.1 (4.5); 86% non-small cell lung cancer (NSCLC); 43% ever diagnosed as metastatic. 52% underwent surgery; 76% received chemotherapy, 65% radiation. 53% were at risk for clinically significant anxiety; 42% for clinically significant depression. Concerns about relationships and intimacy were associated with greater odds of anxiety risk ( OR= 1.70; p 〈 .01); a positive interaction suggested that anxiety risk among individuals with NSCLC varied by HCTC concerns, with greater concerns being associated with higher risk ( p 〈 .05). Concerns about symptom burden and impact ( OR= 1.21; p 〈 .01) and HCTC ( OR= 1.57; p 〈 .05) were significantly associated with greater odds of depression risk; these associations did not vary by LC type. Conclusions: Concerns around health care team communication, relationships and intimacy, and symptom burden and impact are important considerations in understanding risk for anxiety and depression among lung cancer patients and survivors. Additionally, type of lung cancer (NSCLC) can moderate the degree to which concerns about HCTC are associated with risk. Findings highlight the need for constructive patient-provider communication, particularly around relationships and intimacy and symptom burden. Clinical trial information: NCT02333604.
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
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    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2019
    detail.hit.zdb_id: 2005181-5
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  • 3
    Online Resource
    Online Resource
    American Society of Clinical Oncology (ASCO) ; 2018
    In:  Journal of Clinical Oncology Vol. 36, No. 15_suppl ( 2018-05-20), p. e22131-e22131
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 36, No. 15_suppl ( 2018-05-20), p. e22131-e22131
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
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    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2018
    detail.hit.zdb_id: 2005181-5
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  • 4
    Online Resource
    Online Resource
    American Society of Clinical Oncology (ASCO) ; 2018
    In:  Journal of Clinical Oncology Vol. 36, No. 6_suppl ( 2018-02-20), p. 42-42
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 36, No. 6_suppl ( 2018-02-20), p. 42-42
    Abstract: 42 Background: Recruitment into cancer clinical trials (CCTs) remains challenging despite efforts to enhance patient understanding of and access to CCTs. We examined perceptions of CCTs among prostate cancer (PC) survivors. Methods: 86 PC survivors enrolled in Cancer Support Community’s Cancer Experience Registry online research platform, provided demographic and disease history, and rated their agreement (0 = strongly disagree; 4 = strongly agree) with 8 CCT statements. We examined bivariate associations between CCT counseling and individual factors via Spearman’s rank correlation and chi-square tests. Results: Participants were 95% White; mean (SD) age = 65 (7) years; time since diagnosis 4 (4) years. 24% had surgery, 34% underwent radiation, 20% both; 31% currently and 18% previously received hormone therapy. 32% were diagnosed 5+ years ago; 22% reported recurrence, 31% metastatic disease. 33% reported that their health care team spoke to them about participating in a CCT, with a non-significant trend for lower prevalence if all or part of care was received at a community hospital/cancer center (24%) vs. at an academic or comprehensive cancer center or private oncology practice (47%; χ 2 = 3.03, p = .082). 25% did not receive information about CCTs from the health care team prior to making a treatment decision. 21% reported there was a CCT available to them; 35% considered a CCT for treatment; 11% participated in a CCT. Regarding beliefs about CCTs (% agree or strongly agree): 64% felt uncomfortable with treatment random assignment; 52% feared receiving a placebo; 40% feared treatment side effects; 23% believed health insurance would not cover a CCT; 16% believed no clinical trials are available in their community; 16% felt mistrust and fear of being used as a “guinea pig” for research; 11% had concern about logistical barriers, e.g., transportation; 6% did not understand what CCTs are. Conclusions: Many prostate cancer survivors are uncomfortable with random assignment to treatment in a CCT and fear receiving a potentially ineffective placebo. Our findings underscore the need for comprehensive treatment decision counseling and patient education via health care providers and patient advocacy organizations.
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
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    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2018
    detail.hit.zdb_id: 2005181-5
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  • 5
    In: Journal of the National Comprehensive Cancer Network, Harborside Press, LLC, Vol. 17, No. 3.5 ( 2019-03-08), p. HSR19-113-
    Abstract: Background: Despite growing recognition that patient preferences and values should inform cancer care, patients’ views continue to be under-represented. We developed a quantitative tool, Valued Outcomes in the Cancer Experience (VOICE), to measure patient priorities and to understand discrepancies between what matters most to patients and what patients believe they can control. This study presents VOICE development and initial validation. Methods: 459 cancer patients completed an online survey and rated level of importance and perceived control for 54 value items (0=not at all; 4=very much). Items were derived from patient and caregiver focus groups and included themes such as independence, functional abilities, planning for the future, symptom management, health knowledge, and social support. Participants also completed validated measures of hope, optimism, quality of life, financial toxicity, spiritual well-being, illness perceptions, social support, self-efficacy, intolerance of uncertainty, and cancer-related distress. Iterative exploratory factor analysis (EFA) with direct oblique rotation, magnitude of importance and control ratings, and Pearson correlations between items and validation measures were used to inform scale refinement. Results: Participants were 86% non-Hispanic white; mean age=60 years, SD=10; 38% breast cancer, 18% blood, 9% lung, 9% prostate; mean time since diagnosis=6.5 years, SD=6; 22% metastatic. Items that did not load in the EFA, or were not associated with conceptually relevant validation measures, were removed or reworded. The final EFA explained over half of the variance in the data and demonstrated good fit, with absolute and relative fit indices in established acceptable ranges (P 〈 .001). The refined VOICE measure addresses diverse themes including access to care, maintaining independence, longevity, shared decision making, illness understanding, symptom management, emotional support, connection to illness community, spirituality, and end of life preparation. Conclusions: The study results demonstrate a framework for developing a quantitative, multidimensional measure of patient values. By understanding what matters most to patients, VOICE is positioned to bring patient preferences to the foreground of cancer care, contribute to shared decision making, and enhance care. Next steps include further validation of this tool in diverse settings, including oncology practices and community-based organizations.
    Type of Medium: Online Resource
    ISSN: 1540-1405 , 1540-1413
    Language: Unknown
    Publisher: Harborside Press, LLC
    Publication Date: 2019
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  • 6
    In: Palliative and Supportive Care, Cambridge University Press (CUP), Vol. 21, No. 3 ( 2023-06), p. 465-476
    Abstract: 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.
    Type of Medium: Online Resource
    ISSN: 1478-9515 , 1478-9523
    Language: English
    Publisher: Cambridge University Press (CUP)
    Publication Date: 2023
    detail.hit.zdb_id: 2121158-9
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  • 7
    In: Blood, American Society of Hematology, Vol. 132, No. Supplement 1 ( 2018-11-29), p. 4830-4830
    Abstract: Background: As long-term survival rates for multiple myeloma (MM) improve, and patients receive more prolonged courses of treatment, individuals living with MM experience cumulative physical symptom burden and psychosocial distress. However, the relationship between physical and psychosocial symptoms in MM remains poorly understood. Sleep disturbance is a common symptom in MM, and has been linked to both physical symptoms and psychological issues, including fatigue, mood disturbance, and decreased physical function. We test our hypothesis that the interaction between physical and psychosocial health is associated with sleep disturbance in a national sample of MM patients. Methods: Using data from the Cancer Support Community's Cancer Experience Registry®, our analytic sample includes 288 participants who reported MM as their primary diagnosis and completed the Patient-Reported Outcomes Measurement Information System (PROMIS-29v1.0), a self-reported measure of functioning in 7 domains (depression, anxiety, satisfaction with social roles, physical function, pain interference, fatigue, and sleep disturbance). The dependent variable in all analyses was the continuous T-score on the PROMIS sleep disturbance subscale. Our independent variables include psychosocial distress, operationalized using a continuous T-score on the PROMIS depression subscale, and physical symptom burden, which we calculate using patient-reported data on daily interference from peripheral neuropathy, bone pain, GI toxicity, and infection. Using multivariate regression, we predicted sleep disturbance from psychosocial distress and physical symptom burden, controlling for gender, age, race/ethnicity, time since diagnosis, and a dichotomous indicator of ever having received a stem cell transplant. Next, we calculated an interaction term (physical symptom burden X distress) to evaluate whether sleep disturbance is associated with the concurrent presentation of physical and psychosocial symptoms. Results: Overall, 17% of our sample reported levels of psychosocial distress that were more than one standard deviation above the national average on the PROMIS depression subscale. Approximately 6% fell above the national average for sleep disturbance. Our sample was 54% female, 86% White, and averaged 63 years of age (SD = 9), with a mean time since diagnosis of 4 years. Results of the multivariate analyses revealed that physical symptom burden and psychosocial distress were independently and positively associated with sleep disturbance (p 〈 .05). In other words, greater physical symptom burden and higher levels of distress were linked to elevated sleep disturbance, after controlling for sociodemographic and clinical variables. Additionally, the interaction between physical symptom burden and psychosocial distress on sleep disturbance was statistically significant (p = .05). That is, the degree to which MM symptom burden is linked to sleep disturbance depends on psychological distress. Specifically, sleep disturbance is intensified for individuals living with MM when physical symptom burden is accompanied by distress. Overall, our results point to the important interplay of physical and psychological health for sleep. Conclusion: In the presence of physical symptom burden, sleep disturbance is exacerbated for individuals with psychosocial distress. Clinicians should consider screening for and addressing psychosocial distress when addressing sleep disturbance, particularly among those patients who also report physical symptoms. Indeed, assessing both physical and psychosocial symptoms will inform more comprehensive symptom management. We recommend referrals to inter-disciplinary teams with specialists that address both physical and psychosocial concerns. Disclosures Birhiray: Genomic Health: Patents & Royalties; Norvatis: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; Eli-Lilly: Speakers Bureau; Alexion: Consultancy; Takeda: Research Funding, Speakers Bureau; Amgen: Membership on an entity's Board of Directors or advisory committees, Research Funding, Speakers Bureau; Tessaro: Speakers Bureau; Pharmacyclics: Speakers Bureau; AstraZeneca: Speakers Bureau; Pfizer: Speakers Bureau; Excelis: Speakers Bureau; Puma: Research Funding, Speakers Bureau; Clovis Oncology: Speakers Bureau; Sanofi Oncology: Speakers Bureau; Incyte: Speakers Bureau; Bristol Myers Squibb: Speakers Bureau; Janssen: Consultancy, Speakers Bureau; Bayer: Membership on an entity's Board of Directors or advisory committees; Celgene: Membership on an entity's Board of Directors or advisory committees; Helsinn: Membership on an entity's Board of Directors or advisory committees; Abbvie: Membership on an entity's Board of Directors or advisory committees.
    Type of Medium: Online Resource
    ISSN: 0006-4971 , 1528-0020
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    Language: English
    Publisher: American Society of Hematology
    Publication Date: 2018
    detail.hit.zdb_id: 1468538-3
    detail.hit.zdb_id: 80069-7
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  • 8
    Online Resource
    Online Resource
    American Association for Cancer Research (AACR) ; 2020
    In:  Cancer Research Vol. 80, No. 4_Supplement ( 2020-02-15), p. P2-13-12-P2-13-12
    In: Cancer Research, American Association for Cancer Research (AACR), Vol. 80, No. 4_Supplement ( 2020-02-15), p. P2-13-12-P2-13-12
    Abstract: Introduction: Living with cancer can present physical and emotional challenges. The symptoms and side effects of breast cancer and its treatment can be intensive and long lasting and may interfere with spending time with family, friends, and community. The aims of the present analysis were to 1) describe social functioning and isolation among metastatic breast cancer (MBC) survivors who received chemotherapy, and 2) identify factors related to poorer social functioning and greater concern about feeling isolated among survivors. Methods: 273 female MBC survivors from the Cancer Support Community’s Cancer Experience Registry® reported a history of chemotherapy, completed the PROMIS-29v2.0 health-related quality of life survey, and rated their level of concern (0=not at all; 4 = very serious) about key areas of life, including social isolation (CancerSupportSource®). We used multiple regression analysis to identify significant correlates of 1) social functioning (T-scores for PROMIS Ability to Participate in Social Roles and Activities scale), and 2) level of concern about “feeling lonely or isolated.” Independent variables included socio-demographic factors (age, employment, income, and race), clinical history (time since diagnosis, time between initial and metastatic diagnoses), treatment history (currently receiving chemotherapy or radiation; method of chemotherapy administration ever received), and physical symptom burden (daily interference from peripheral neuropathy (PN) and fatigue). Results: Participants were 86% White, 9% Black; mean age 53.4 (SD=11.2) years. Time between initial cancer diagnosis and metastatic diagnoses averaged 3.3 (SD=5.2; range 0-27) years. 56% were currently receiving chemotherapy; 24% radiation. 60% ever received both IV and oral chemotherapy, 30% IV only, 9% oral only. Scores for the 4-item PROMIS social functioning scale were significantly (p & lt;.001) worse for MBC patients and survivors than the national average of T=50 for the U.S. population (95% CI=44.5-46.9, n = 246). When considering individual responses, 23.6% of MBC respondents reported substantially worse social functioning ( & gt;1SD) than the national average. 32.4% of MBC participants were moderately to very seriously concerned about feelings of social isolation. About two in three reported they have trouble doing want they want to do (% sometimes, often, or always) regarding their usual work (70%), activities with friends (67%), family activities (64%), and regular leisure activities with others (63%). In multivariate regression analysis, predictors of poorer social functioning (R2 = .564, p & lt; .001, n = 134) included currently receiving chemotherapy (semipartial r = -.19, p & lt; .01), greater PN interference (semipartial r = -.22, p & lt; .001), and greater fatigue interference (semipartial r = -.49, p & lt; .001). Predictors of concern about feeling lonely or isolated (R2 = .35, p & lt; .001, n = 143) included greater PN interference (semipartial r = .16, p & lt; .05) and fatigue interference (semipartial r = .37, p & lt; .001). Significant associations with social functioning and concern about feeling isolated in bivariate analysis but not multivariate included lower income, unemployment, less time since diagnosis, and shorter interval between initial and metastatic diagnoses. Conclusion: Symptom burden, including peripheral neuropathy and fatigue, are associated with poorer social functioning and increased isolation among metastatic breast cancer survivors. Currently undergoing chemotherapy treatment is also associated with poorer social function, even after accounting for the contributions of symptom burden. Our results highlight the significant social impact of living with metastatic breast cancer and the value of tailored supportive care to address survivors’ unmet physical and socioemotional needs. Citation Format: Alexandra K Zaleta, Melissa F Miller, Shauna McManus, Kelly Clark, M. Claire Saxton. Predictors of social function and feelings of isolation among metastatic breast cancer survivors [abstract]. In: Proceedings of the 2019 San Antonio Breast Cancer Symposium; 2019 Dec 10-14; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2020;80(4 Suppl):Abstract nr P2-13-12.
    Type of Medium: Online Resource
    ISSN: 0008-5472 , 1538-7445
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    Language: English
    Publisher: American Association for Cancer Research (AACR)
    Publication Date: 2020
    detail.hit.zdb_id: 2036785-5
    detail.hit.zdb_id: 1432-1
    detail.hit.zdb_id: 410466-3
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  • 9
    Online Resource
    Online Resource
    Springer Science and Business Media LLC ; 2020
    In:  Supportive Care in Cancer Vol. 28, No. 1 ( 2020-01), p. 329-339
    In: Supportive Care in Cancer, Springer Science and Business Media LLC, Vol. 28, No. 1 ( 2020-01), p. 329-339
    Abstract: Unintentional weight loss (UWL) is a prevalent problem in people with cancer and is associated with poorer psychosocial outcomes. A gap exists in understanding whether and how perceived and/or weight status impacts experiences of UWL. Thus, we sought to examine subjective experiences of UWL in people with cancer, and whether perceived and/or actual weight status impacts these experiences. Methods Participants were recruited through Cancer Support Community’s Cancer Experience Registry® and related networks. Participants completed an online survey that included the FAACT Anorexia-Cachexia subscale, and 19 items that captured six themes related to “beliefs and concerns” (positive beliefs, psychosocial impact, physical impact, cancer outcomes, self-esteem, relationships with others). Perceived weight status (PWS) was assessed using a single item. Body mass index (BMI) was calculated using self-reported weight and height measurements. Results Of 326 respondents, 114 reported experiencing UWL. Over one-third misperceived their weight, with 29% perceiving weight status as below their BMI status. UWL in those with perceived weight status of overweight/obese was associated with positive beliefs. However, being underweight by BMI or perceiving oneself as underweight were both associated with greater concerns about weight loss. Perceived weight status of underweight compared to normal or overweight/obese weight status was associated with poorer psychosocial well-being, personal control, self-esteem, and relationships with others. Conclusion In people with cancer, perceived weight status, rather than BMI, had greater impact on negative “beliefs and concerns” about UWL. Findings suggest assessment of both perceived and actual BMI to address the impact of UWL on psychosocial wellbeing.
    Type of Medium: Online Resource
    ISSN: 0941-4355 , 1433-7339
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2020
    detail.hit.zdb_id: 1463166-0
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  • 10
    In: Supportive Care in Cancer, Springer Science and Business Media LLC, Vol. 29, No. 8 ( 2021-08), p. 4413-4421
    Abstract: 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.
    Type of Medium: Online Resource
    ISSN: 0941-4355 , 1433-7339
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2021
    detail.hit.zdb_id: 1463166-0
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