Melissa F. Miller, Melyssa Allen, Diane Robinson, Nicole Nicksic and Alexandra Zaleta
Shauna McManus, Alexandra K. Zaleta, Melissa F. Miller, Joanne S. Buzaglo, Julie S. Olson, Sara Goldberger and Kevin Stein
Background: CancerSupportSource (CSS) is a 25-item distress screening tool implemented at community-based cancer support organizations and hospitals nationwide. CSS assesses distress over 5 domains: (1) emotional concerns (including depression and anxiety risk screening subscales), (2) symptom burden, (3) body and healthy lifestyle, (4) healthcare team communication, and (5) relationships. This study developed a short form of CSS and examined its psychometric properties. Methods: 2,379 cancer survivors enrolled in the Cancer Support Community’s Cancer Experience Registry. Participants provided demographic and clinical background and completed CSS-25 and PROMIS-29, a measure of health-related quality of life. Item reduction was conducted with a subsample of 1,435 survivors and included external item quality (correlations between items and PROMIS-29 scales), internal item quality (inter-item and inter-factor correlations, factor loadings and structure, and item communalities from an exploratory factor analysis of CSS-25), and professional judgement (ranking/prioritization of items by CSS-25 developers, accounting for theoretical and practical implications). Pearson correlations and confirmatory factor analysis were conducted on a separate subsample of 944 survivors to corroborate psychometric properties and dimensionality of the shortened scale. Results: Scale refinement resulted in a 15-item short form of CSS (CSS-15). At least 1 item from each of the 5 CSS-25 domains was retained to preserve multidimensionality, including anxiety and depression risk screening subscale items. Additionally, 1 item about tobacco/substance use was kept due to clinical significance for risk assessment. In confirmatory factor analysis, the model explained 59% of the variance and demonstrated good fit (RMSEA=0.068, 90% CI=0.061–0.075; SRMR=0.033; CFI=0.959; χ 2(68)=334.75, P<.001). Correlation between CSS-15 and CSS-25 was 0.986, P<.001. Total distress was associated with PROMIS subscales (rs=−.65–.75, ps<.001); internal consistency reliability was excellent (α=.92). Conclusions: CSS-15 is a brief, reliable, and valid multidimensional measure of distress. The reduced measure retained excellent internal consistency and a stable factor structure, while correlating well with CSS-25 and PROMIS-29. CSS-15 can serve as a practical tool to efficiently screen for distress among cancer patients and survivors.
Alexandra K. Zaleta, Shauna McManus, Joanne S. Buzaglo, Eva Y. N. Yuen, Julie S. Olson, Melissa F. Miller, Karen Hurley, Lillie D. Shockney, Sara Goldberger, Mitch Golant and Kevin Stein
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.