Understanding the Lexicon of Fatigue in Parkinson’s Disease

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.

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

“…This intriguing difference between our results and the results of other studies 25,27 that recruited smaller proportions of women warrants further study. In addition, our own prior work analyzing free-text responses from the same cohort 5 found that women were more likely to describe fatigue as overwhelming than men. These apparent contradictions may reflect aspects of fatigue and/or quality of life that are differently captured in quantitative scales such as the PFS-16 or PDQ-8 compared with free-text responses.…”

“…Participants in the PD cohort of the Fox Insight study were invited to participate in this substudy on fatigue in PD 5 if they met the following criteria: provided data on their age, sex, year of diagnosis, and completed the Fox Insight assessments regarding depression (15‐item Geriatric Depression Scale [GDS‐15]) and Physical Activity Scale for the Elderly (PASE) within the prior 90 days. This latter requirement was necessitated by other study objectives not considered here.…”

“…Fatigue, 1 of the most common nonmotor symptoms in PD, occurs in up to 70% of patients 2 and is associated with lower health-related quality of life (HR-QOL) 3 and an increased risk of disease complications. 4 In comparison with other PD symptoms, fatigue comprises multiple dimensions 5,6 and is poorly responsive to pharmacological and nonpharmacological intervention, 7 making it 1 of the most challenging aspects of the disease to manage. 8,9 Given the breadth of this problem, understanding the risk factors for PD fatigue and its effects on HR-QOL is critical in this patient population.…”

Measuring Quality of Life in Parkinson’s Disease—A Call to Rethink Conceptualizations and Assessments

“…As a starting point, clear definitions and strict separation from HRQoL is required. In terms of the difficulty of mapping qualitative characteristics, one may advocate for qualitative assessment methods, e.g., in the form of structured interviews with open questions as a possible remedy [ 37 ]. These techniques may be particularly helpful to define additional dimensions to those implied in HRQoL questionnaires.…”

Triggers and alleviating factors for fatigue in Parkinson’s disease

“…This work occurred as part of the Michael J Fox Foundation's Parkinson's Disease Education Consortium (PDEC) 2018 research program on the experience and impact of fatigue in PD, as described previously in detail [35]. Briefly, the sample was drawn from the Fox Insight (FI) cohort.…”