Valued outcomes in the cancer experience: Patient priorities and control.

Abstract

84 Background: In the era of value-based cancer care, identifying what is important to cancer survivors, and their perceived control over these experiences, can inform shared decision-making and support quality care. We examined cancer patient priorities and control to guide the development of a new measure of patient value, Valued Outcomes in the Cancer Experience (VOICE). Methods: 459 cancer patients completed an online survey and rated level of importance and control over 54 value items (0 = not at all; 4 = very much). Items of most and least importance, items with most and least control, and rating discrepancies (importance-control) were identified. Bivariate associations with socio-demographics were examined. 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 of highest importance (quite a bit to very much) included, “Having your health care team (HCT) talk to you in a way that makes sense to you” (99% of participants); “Making decisions for yourself” (99%); “Talking honestly with your HCT about your illness” (99%). Participants reported the most control over, “Talking honestly with your HCT about your illness” (89%); “Making decisions for yourself” (88%), “Understanding your illness” (84%). Greatest discrepancies were, “Having your illness not get worse or come back” (96% Important; 27% Control); “Having energy to do things that are important to you (98% Important; 41% Control); “Being able to afford medical expenses” (96% Important; 49% Control); “Having a death free from suffering” (91% Important; 40% Control); “Having your medical providers communicate with each other about your care” (94% Important; 44% Control). Greater importance/control discrepancies were associated with lower income, unemployment due to disability, and poorer health ( ps < .05). Conclusions: Cancer patients experience notable discrepancies between personal priorities and their ability to control these experiences, suggesting key areas for intervention and support. Next steps include psychometric assessment to refine the VOICE scale to guide clinical and research efforts to improve patient care outcomes.