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What Fatigue Means to Persons Living with Parkinson's Disease? A Qualitative Study
Author(s) -
George Derek D.,
Baer Nicholas K.,
Berliner Jean M.,
Jones Jacqueline,
Kluger Benzi M.
Publication year - 2021
Publication title -
movement disorders clinical practice
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.754
H-Index - 18
ISSN - 2330-1619
DOI - 10.1002/mdc3.13270
Subject(s) - terminology , qualitative research , psychology , clinical psychology , disease , medicine , developmental psychology , applied psychology , cognitive psychology , pathology , social science , philosophy , linguistics , sociology
Background Fatigue is one of the most prevalent non‐motor symptoms of Parkinson's disease (PD). Research is hampered by imprecise terminology and the lack of case definition criteria. Objectives To elicit the experiences of persons living with PD‐related fatigue and provide ecological validation for case definition criteria. Methods Qualitative interviews were conducted with 22 individuals and 4 focus groups, and analyzed using an inductive qualitative method. Results Six core themes emerged: (i) difficulty initiating and completing important tasks; (ii) desire for others to understand their fatigue experience; (iii) heterogeneity of experiences and descriptions of fatigue; (iv) complex relationships with other non‐motor symptoms; (v) variable self‐management strategies; and (vi) general alignment with proposed case definition criteria. Conclusions PD‐related fatigue impacts function, is subjectively distinguishable from other non‐motor symptoms, has heterogeneous descriptions, and may be mitigated by various self‐management strategies. Proposed case definition criteria appear ecologically valid and warrant further optimization and testing.