Exploring the impact of fatigue in Parkinson’s Disease: a mixed methods study

Abstract

Fatigue is one of the most disabling non-motor symptoms in Parkinson’s disease (PD), reported by one-third of people with Parkinson’s (PwP). It is difficult to diagnose, manage and affects rehabilitation outcomes. Absence of a definition, and evolving terminology of fatigue (perception) and fatigability (performance) make appraising literature challenging, contributing to inconsistent understanding of Parkinson’s-related fatigue. The study aimed to investigate the impact of fatigue by exploring features of fatigue, and the relationship between fatigue and physical activity among PwP.
In this exploratory mixed-methods study divided into two phases, Phase 1, used a survey to explore features of fatigue among PwP. Phase-2a used fatigue diaries and wearable sensors to assess the relationship between fatigue (perception) and physical activities (performance) over 7 days in PwP and healthy volunteers in their homes. Phase-2b explored the lived experience of fatigue in PwP using semi-structured interviews.
Findings:
Phase-1: 64.5% (91/141) of PwP survey respondents reported fatigue including features of predictability (65%), fluctuations (85%), impact on employment (92%), and did not seek professional help (82%). High frequency and severity of fatigue affected movement, balance, concentration, causing considerable activity and exercise restriction and abandonment.
Phase-2: 13 PwP and 5 healthy volunteers participated in the observational study (Phase-2a); 12 PwP were interviewed for Phase-2b. Phase-2a demonstrated that both frequency and severity of fatigue were significantly associated with reduced active movement intensity in PwP in free-living settings over 7 days. In Phase-2b, motor and non-motor symptoms associated with PD such as tremor, dyskinesias, bradykinesia, low mood, sleep, and cognitive difficulties triggered fatigue. PwP were hesitant to discuss fatigue with clinicians and largely self-managed symptoms.
Conclusion: Findings highlighted frequency of fatigue as a potential clinical marker; active movement intensity from wearables as a potential objective marker for fatigue, use of multi-dimensional outcome measures to quantify physical, cognitive and emotional fatigue, and continuation of low to moderate intensity exercise to manage fatigue.

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Identifiers

ORCID for Veena Ashok Agarwal: orcid.org/0000-0002-6904-8243

ORCID for Dorit Kunkel: orcid.org/0000-0003-4449-1414

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