Fatigue is one of the most disabling symptoms reported by a third of people with Parkinson's (PwP), but is difficult to diagnose and manage. The aim of our study was to explore differences between PwP experiencing fatigue at varying frequencies.

Following Ethics approval, we invited Parkinson's UK members across southern England via email, website promotion and local branch meetings to complete a self-report survey on frequency, intensity and impact of fatigue defined as ‘intense/severe tiredness, or exhaustion’.

In all, 100/130 (77%) people returned the questionnaires, 59 males. 67% respondents felt fatigued ‘frequently’ (2–5 times per week/few hours daily/all-day everyday), 23% ‘sometimes’ (2–5 times/month) and 10% ‘rarely’ (0–1 times/month).

‘Frequently-fatigued’, ‘sometimes-fatigued’ and ‘rarely-fatigued’ did not significantly differ in duration since diagnosis (6.8 years vs. 6.4 years vs. 7.25 years) or age (68.1 years vs. 66.2 years vs. 69.4 years). Higher proportion of ‘frequently-fatigued’ participants compared to ‘sometimes-fatigued’ and ‘rarely-fatigued’ were women (45% vs. 35% vs. 30%), working (22% vs. 17% vs. 10%), and reported greater intensity of fatigue on Parkinson's Fatigue Scale (58 vs. 42 vs. 31/80).

Sixty-one percent Frequently-fatigued participants satisfied the key diagnostic-criterion of ‘feeling fatigued most of the day nearly every-day/every-day’ for establishing Parkinson's-related fatigue proposed by the Movement Disorder Society. They reported fatigue predominantly in early-afternoon (55%) and evening (49%). 84% frequently-fatigued participants could identify factors that triggered fatigue; 81% felt stress made fatigue worse. 84% frequently-fatigued participants felt tired despite resting.

More frequently-fatigued PwP than sometimes-fatigued reported falls (51% vs. 26%); gave up routine activities (48% vs. 4%) and hobbies (49% v 30%); and planned further restrictions to activities (36% vs. 17%) and hobbies (37% vs. 13%) due to fatigue.

Activity and leisure abandonment is higher among frequently-fatigued PwP who experience fatigue symptoms at greater intensity than other PwP. We plan to explore impact of fatigue in Parkinson's using wearable sensors.