HSR21-076: Valued Outcomes in the Cancer Experience (VOICE™): Developing and Validating a Measure of Patient Experience

Background: Despite recognition that patient perspectives should inform cancer care, validated measures that meaningfully capture the patient experience across the cancer continuum remain lacking. We developed Valued Outcomes in the Cancer Experience (VOICE), a measure of patients’ perceived control over personal priorities within their cancer experience. This study presents critical steps in VOICE scale construction and evaluation. Methods: 623 cancer patients rated level of importance and control for 35 VOICE items (0=not at all; 4=very much) and completed published measures of hope, quality of life, financial toxicity, and cancer-related distress. Item descriptives, exploratory factor analysis (EFA) of control ratings, Pearson correlations with convergent validity measures, and content validity assessment informed factor extraction and item reduction. Psychometric evaluation of the shortened item set included tests of internal consistency, test-retest reliability, and construct validity. Results: Participants were 76% non-Hispanic White, 10% Black, 7% Hispanic; mean age=55.6 y (range: 18-90) with diverse cancer diagnoses; mean time since diagnosis=6 y (SD=6); 18% metastatic, 41% in current treatment. Items with limited ratings variability, low factor loadings, low reliability, or limited associations with relevant validation measures were removed or reworded. The final EFA explained 54% of model variance and demonstrated good fit (RMSR=0.01, TLI=0.98, RMSEA=0.03). The revised VOICE measure comprised 7 factors across a set of 21 items (15 retained, 6 reworded, 1 added) highly important to cancer patients and survivors (personal identity, functional capacity, disease progression, quality care, illness knowledge, social support, and financial capability). VOICE showed high internal consistency (α=0.91), good test-retest agreement (ICC=0.83), strong convergent validity (where lower control was associated with lower hope, greater financial toxicity, and greater depression and anxiety), and discriminated between patient groups. Conclusions: VOICE measures patients’ perceived control over a diverse range of personal cancer care priorities, creating a platform for elevating patient perspectives and identifying pathways for empowerment and hope across the disease spectrum. Next steps include testing the revised VOICE measure in real world conditions and validating the responsiveness of VOICE factors in detecting and benchmarking meaningful changes over time.