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

Authors:
Alexandra K. ZaletaCancer Support Community, Research and Training Institute, Philadelphia, PA

Search for other papers by Alexandra K. Zaleta in
Current site
Google Scholar
PubMed
Close
 PhD
,
Erica E. FortuneCancer Support Community, Research and Training Institute, Philadelphia, PA

Search for other papers by Erica E. Fortune in
Current site
Google Scholar
PubMed
Close
 PhD
,
Melissa F. MillerCancer Support Community, Research and Training Institute, Philadelphia, PA

Search for other papers by Melissa F. Miller in
Current site
Google Scholar
PubMed
Close
 PhD, MPH
,
Branlyn W. DeRosaCancer Support Community, Research and Training Institute, Philadelphia, PA

Search for other papers by Branlyn W. DeRosa in
Current site
Google Scholar
PubMed
Close
 PhD
,
Joanne S. BuzagloConcertAI, Boston, MA

Search for other papers by Joanne S. Buzaglo in
Current site
Google Scholar
PubMed
Close
 PhD
,
Karen HurleyCleveland Clinic, Cleveland, OH

Search for other papers by Karen Hurley in
Current site
Google Scholar
PubMed
Close
 PhD
,
Mitch GolantCancer Support Community, Washington, DC

Search for other papers by Mitch Golant in
Current site
Google Scholar
PubMed
Close
 PhD
,
Sara GoldbergerCancer Support Community, Washington, DC

Search for other papers by Sara Goldberger in
Current site
Google Scholar
PubMed
Close
 LCSW-R
,
Bruce RapkinAlbert Einstein College of Medicine, Bronx, NY

Search for other papers by Bruce Rapkin in
Current site
Google Scholar
PubMed
Close
 PhD
,
Lillie D. ShockneyJohns Hopkins University School of Medicine, Baltimore, MD

Search for other papers by Lillie D. Shockney in
Current site
Google Scholar
PubMed
Close
 RN, BS, MS
,
Jemeille AckoureyCancer Support Community, Research and Training Institute, Philadelphia, PA

Search for other papers by Jemeille Ackourey in
Current site
Google Scholar
PubMed
Close
 MPH
, and
Kelly A. ClarkCancer Support Community, Research and Training Institute, Philadelphia, PA

Search for other papers by Kelly A. Clark in
Current site
Google Scholar
PubMed
Close
 MA

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.

Corresponding Author: Alexandra K. Zaleta, PhD
  • Collapse
  • Expand