Sneha Mantri1, Emily Klawson2, Steven Albert2, Karina Nabieva3, Madeline Lepore4, Stephen Kahl5, Margaret Daeschler6, Eugenia Mamikonyan7, Catherine Kopil6, Connie Marras3, Lana M Chahine4. 1. Department of Neurology, Duke University, Durham, NC, USA. 2. Department of Behavioral and Community Health Sciences, University of Pittsburgh, Pittsburgh, PA, USA. 3. The Edmond J Safra Program in Parkinson's disease, Toronto Western Hospital, University of Toronto, Toronto, Ontario, USA. 4. Department of Neurology, University of Pittsburgh, Pittsburgh, PA, USA. 5. Tuck School of Business, Dartmouth College, Hanover, NH, USA. 6. Michael J. Fox Foundation, New York, NY, USA. 7. Department of Psychiatry, University of Pennsylvania, Philadelphia, PA, USA.
Abstract
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.
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.
Entities:
Keywords:
Fatigue; Parkinson’s disease; qualitative research
Authors: Sneha Mantri; Lana M Chahine; Karina Nabieva; Robert Feldman; Andrew Althouse; Benjamin Torsney; Steven M Albert; Catherine Kopil; Connie Marras Journal: Mov Disord Clin Pract Date: 2021-10-28