'Ups and Downs, Joys and Sorrows' – Assessment and Clinical Relevance of Patient Priorities in an Interdisciplinary Parkinson’s Disease Clinic

Purpose: Barriers to communication and inaccurate provider assumptions about patient priorities limit the delivery of comprehensive, high-quality, patient-centered care (PCC) to people with Parkinson’s (PWP). This study aimed to analyze priorities of PWP using a qualitative, unstructured single-question survey and to test associations with validated quality of life (QOL) measures. Methods: During appointments at a subspecialty, interdisciplinary clinic, PWP (n = 139) provided written responses to the prompt: “What is important for your care team to know about you?” Patient Health Questionnaire, Montreal Cognitive Assessment, and Hoehn and Yahr scales were obtained through retrospective chart review. Key qualitative themes were identified through grounded theory analysis, and associations with quantitative health measures were tested with correlation analyses. Results: Common themes included participant health (eg, PD-related goals and comorbidities), non-illness identities (eg, family or community role), and the psychosocial impact of PD (eg, losing independence and uncertainty). Positive sentiments (n = 73), such as motivation and optimism, were more common than negative sentiments (n = 45), such as loss and fear. There was moderate concordance between worsened mental health and uncertainty (rho = 0.206, p = 0.02) and inverse concordance between worsened mobility and gratitude (rho = -0.174, p = 0.04). Conclusions: The range of priorities that PWP want to share with their care team is more diverse than that of common provider assumptions, is correlated with clinical outcomes such as mental health and mobility, and may not be captured by existing QOL assessment tools. An open-ended, qualitative prompt should be incorporated into routine specialist care for PWP as a valuable QOL indicator.