Understanding the Lexicon of Fatigue in Parkinson's Disease.


BACKGROUND:Fatigue in Parkinson's disease (PD) is multifaceted and associated with reduced quality of life. In turn, the language used by people with PD to describe fatigue is variable and poorly understood. We sought to elucidate the lexicon of fatigue using a qualitative grounded theory approach. OBJECTIVE:The objective of this study was to understand how patients with PD describe fatigue. METHODS:A pre-study phase of online journaling (Phase 1) provided information regarding topics of importance to patients. Following this, two independent samples of fatigued subjects were studied. Individuals with PD participated in a telephone interview (Phase 2); interview transcripts were analyzed to develop a detailed codebook. To ensure trustworthiness of the findings, an online survey (Phase 3) was administered to individuals with self-reported PD participating in the online study Fox Insight. The survey included the following question: "How do you define fatigue? Please provide your definition in the space below." The codebook developed from Phase 2 was applied to the Phase 3 responses. RESULTS:Fifteen individuals participated in Phase 2 and 413 individuals completed Phase 3. Fatigue was subdivided into three domains: cognitive, emotional, and physical. Nearly all individuals experienced more than one domain of fatigue. The most common themes included tiredness, lack of energy, and negative motivation. CONCLUSION:Fatigue in PD is multidimensional. Questionnaires that only assess the physical impact of fatigue may not be adequate to capture the broad range of experiences of fatigue among people with PD.





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Publication Info

Mantri, Sneha, Emily Klawson, Steven Albert, Karina Nabieva, Madeline Lepore, Stephen Kahl, Margaret Daeschler, Eugenia Mamikonyan, et al. (2020). Understanding the Lexicon of Fatigue in Parkinson's Disease. Journal of Parkinson's disease. pp. 1–9. 10.3233/jpd-202029 Retrieved from https://hdl.handle.net/10161/21099.

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Sneha Arun Mantri

Associate Professor of Neurology

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.

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