RESUMO
PURPOSE: Wearing off of Parkinson's disease medication is common, but triggers and coping strategies for this transient phenomenon are poorly understood. We aimed to assess the lived experience of OFF periods for people with Parkinson's disease. METHODS: Participants in the longitudinal Fox Insight study who endorsed OFF periods were invited to complete a survey consisting of both multiple-choice and free-text responses. Descriptive statistics were used to summarize multiple-choice responses, and free-text responses were classified into themes through iterative discussion by 3 movement disorders specialists. RESULTS: A total of 2110 participants (52.4% male) completed the survey. Tremor was the most common description of OFF periods (n=1038, 49.2%), followed by gait changes (n=535, 25.4%) and rigidity (n=430, 20.4%). Of 1498 specific triggers for OFF symptoms, the most common was stress (n=920, 61.4%), followed by anxiety/depression (n=476, 31.8%) and tiredness/fatigue (n=351, 23.4%). Common coping strategies (n=1416 responses) included exercise (n=678, 47.9%), taking a break (n=504, 35.6%), and meditation (n=276, 19.5%). CONCLUSIONS: Although OFF periods are common, the individual experiences of OFF vary. This knowledge could be used to develop new counseling strategies for OFF periods in people with Parkinson's disease.
RESUMO
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.
