Toward patient-centered outcomes for cognitive evaluations: the perspective of those affected by Parkinson's disease

Objective: Patient-centered outcomes research is predicated on the idea that the opinions, attitudes, and preferences of patients should help inform study design and interpretation. To date, little is known about what defines patient-centered outcomes from cognitive evaluations. The current evaluation sought to explore this issue in persons with Parkinson's disease (PwPD) and their care partners (CP). Method: Focus groups of 22 PwPD/CP dyads were conducted to identify potential consumer oriented endpoints from cognitive evaluations. These endpoints were utilized to create a Patient-Centered Cognitive Assessment Outcomes Scale, which was administered to a different group of 50 PwPD/CP dyads who rated the importance of each outcome and identified their top three priority outcomes. Results: Three themes emerged from the focus groups: improved knowledge, advice, and planning. Both PwPD and CP rated items in all three domains as being very important outcomes. Priorities for outcomes in both groups favored treatment planning information slightly above knowledge based outcomes. Conclusions: The PwPD and CP identified improved knowledge, advice for daily activities, and knowledge they could use to plan for future eventualities as very important. This information can be used as a framework for future studies aimed at demonstrating patient-centered outcomes from neuropsychological evaluations. Implications for future research are discussed.