Objective: To understand how patients with Parkinson disease (PD) experience fatigue and identify potential communication barriers between doctors and patients.

Background: Fatigue in PD is common, interferes with activities of daily living, and is poorly responsive to medication changes. Definitions of fatigue vary and may contribute to doctor-patient confusion. Better understanding of the patient experience and lexicon of fatigue is needed.

Method: The Fox Trial Finder was used to screen participants with a self-reported PD diagnosis who were not taking a dopamine agonist. The screener included the Parkinson’s Fatigue Scale (PFS), Epworth Sleepiness Scale (ESS), and Geriatric Depression Scale (GDS). To minimize the potential confounders of depression and excessive daytime sleepiness, those with abnormal scores on the ESS or GDS were excluded. The study consisted of two patient cohorts: one participated in online journaling (1 hour/day over 3 days) and the other in semi-structured interview (1-hour telephone dialogue)

Results: There were 705 respondents; 155 were on an agonist, 559 sleepy or depressed. Among the remaining who met eligibility criteria, 27 individuals, with varying degrees of fatigue based on their PFS16 responses, completed the study. Demographics of participants are shown in Table 1. [table1] Participants described fatigue as affecting physical, cognitive, and emotional domains. The abrupt and overwhelming nature of fatigue was emphasized, as was living in fear of fatigue. Half of patients had not discussed fatigue with their doctors, indicating they did not expect the doctor to have a solution. Those who had discussed fatigue with their doctors felt that their doctors attributed fatigue to external factors (age, sleep issues, medication) although the participants did not agree with that assessment. Participants used detailed metaphors concerning fatigue (e.g. “like a tsunami”) when talking to their peers but more general terms (e.g. “extremely tired”) when talking with their doctors.

Conclusion: Fatigue impacts several aspects of the well-being of patients with PD, and patients have a rich lexicon for describing the sensation and impact of fatigue.  Ongoing analysis will inform the development of interventions to improve physician-patient communication on fatigue.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/exploring-the-lexicon-of-fatigue-in-parkinson-disease-a-qualitative-approach/