Demographic Influences on the Relationship Between Fatigue and Quality of Life in Parkinson's Disease

I am a movement disorders specialist with a clinical practice focused on the care of people with Parkinson disease (PWP) and other movement disorders. I am interested in ways to improve the quality of care for patients with chronic neurodegenerative conditions, particularly translating clinically effective treatments and lifestyle modifications (e.g. exercise) into the “real world.”  While a growing body of evidence demonstrates that physical activity, including high-intensity exercise, is feasible for PWP and leads to improved motor and non-motor outcomes, translating that knowledge into practice has been challenging. My research in this area focuses on the impact of patient/doctor communication and social determinants of health on promoting or preventing physical activity among PWP.

 In addition to my clinical training, I hold a Master of Science in Narrative Medicine from Columbia University. This unique program, which grew out of the larger field of medical humanities, expands the conceptual framework of clinical medicine to incorporate patient perspective and social experience. I conduct mixed-methods research to design and implement interventions that are actually meaningful to the target population(s). As an example, in my study of Veterans with PD, I was able to conduct qualitative cluster analysis of Veterans’ self-reported barriers and motivators of adherence to exercise recommendations, reporting for the first time the unique barriers faced by this patient population. Additional funded projects using a narrative medicine approach have included (1) exploring the lexicon of burnout among clinical and non-clinical employees; (2) understanding the experience of fatigue and psychosis among PwP and their care-partners; (3) exploring the interactions between border-crossing in literature and border-crossing in medical education/practice.

In particular, narrative medicine offers guideposts toward a revitalized practice of medicine and medical education. In 2020, I was appointed Director of Medical Humanities at Duke, leading a team of clinician scholars in understanding moral injury and structural inequities in medicine. Under this umbrella, I co-direct the interprofessional course Moral Movements in Medicine; teach in the first-year Clinical Skills Immersion, the second-year Cultural Determinants of Health Disparities, and the fourth-year Medical Humanities courses; and mentor third-year students in the Medical Humanities study track.