Tailoring Reports for Patient-Reported Health Information within Digital Health Tools: Impacts on the Quality of Values Elicitation and Clarification for Complex Treatment Decision-Making in Older Adults with Advanced Cancers

For older adults (≥60) with advanced cancer, treatment decisions may vary substantially from those diagnosed at an earlier stage. Often these patients feel their values and concerns are not incorporated in treatment decisions. Effective methods are needed to elicit, discuss and incorporate patient values into treatment decisions. Best-worst scaling (BWS) is a theory driven approach used in healthcare to elicit values. Tailoring health information, including question prompt lists, can encourage patients to actively participate in consultations. This dissertation addresses a research gap in understanding how tailoring summary reports based on patients’ values elicited from a BWS instrument can prepare and encourage patients to discuss their values and engage in shared decision-making (SDM). This dissertation was conducted in four stages; engagement, development, pretesting, and pilot testing of a values-clarification tool called VOICE. During engagement and development, key stakeholders engaged in concept mapping activities, resulting in consensus on 7 treatment values and 2-3 question prompts per value that are important to older adults with advanced cancer. This aim emphasized participatory engagement among diverse stakeholders and incorporation of tailoring techniques to ensure VOICE was relevant to the intended patient population. During pretesting, participants perceived VOICE to be effective, acceptable, and useful for preparing older adults with advanced cancer to engage in values-based discussions with their clinicians. Patients’ desire to assess, reassess and discuss their values must be incorporated into consultations, and patients want to work with their clinician to align their care with what matters most to them as an individual. During pilot testing, VOICE was found to be more useful in preparing patients to discuss their values than an American Cancer Society flyer, and patients had a clear preference for values-based discussions. This dissertation provided evidence that VOICE resulted in higher quality values-based discussions while highlighting the need for values-clarification training for medical students and oncologists. This dissertation advances knowledge regarding values-clarification, yet further research is still needed to better understand the influencers and contextual factors that provide facilitation or barriers to improving engagement between patients and clinicians and ensures patients values are discussed, understood, and incorporated into treatment decisions.