Physical Activity in Persons With Parkinson's Disease

Primary outcomes

• Physical activity - low and moderate intensity [Baseline and yearly follow-ups for 3 years]: The primary outcome is changes over time in PA (i.e. low + moderate-vigorous intensity PA in time spent per day) measured with accelerometers (Actigraph GT3X+, Pensacola, FL, US) during 7 days in people with Parkinson's disease everyday life.

Secondary outcomes

• Physical activity - total vector magnitude [Baseline and yearly follow-ups for 3 years]: The secondary outcomes are change over time in total vector magnitude measured with accelerometers (Actigraph GT3X+, Pensacola, FL, US) during 7 days in people with Parkinson's disease everyday life.
• Physical activity - low intensity [Baseline and yearly follow-ups for 3 years]: The secondary outcomes are change in time spent in low intensity physical activity per day measured with accelerometers (Actigraph GT3X+, Pensacola, FL, US) during 7 days in people with Parkinson's disease everyday life.
• Physical activity - moderate high intensity [Baseline and yearly follow-ups for 3 years]: The secondary outcomes are change in time spent in moderate-vigorous physical activity per day measured with accelerometers (Actigraph GT3X+, Pensacola, FL, US) during 7 days in people with Parkinson's disease everyday life.
• Physical activity- sedentary [Baseline and yearly follow-ups for 3 years]: The secondary outcomes are change in sedentary time per day measured with accelerometers (Actigraph GT3X+, Pensacola, FL, US) during 7 days in people with Parkinson's disease everyday life.
• Physical activity - steps [Baseline and yearly follow-ups for 3 years]: The secondary outcomes are change in steps per day measured with accelerometers (Actigraph GT3X+, Pensacola, FL, US) during 7 days in people with Parkinson's disease everyday life.

Other outcomes

• Disease severity, Parkinsons symptoms [Baseline and 3 year follow-up]: Disease severity measured with the Movement Disorders Society -Unified Parkinson's Disease Rating Scale) parts 1 to 4. Higher scores = worse/more symptoms
• Gait [Baseline and 3 year follow-up]: Gait speed in m/s measured with the 10 meter walking test or through gait analysis.
• Balance performance [Baseline and 3 year follow-up]: Assessed with the Mini-BESTest. Mini-Balance Evaluation Systems Test a rating scale for dynamic balance incorporating 14 different balance and gait items that were assessed by a physical therapist on a scale from 0-2. 0-28 points with higher scores indicating better balance control
• Anxiety and depression [Baseline and yearly follow-ups for 3 years]: Assessed with Hospital Anxiety and Depression Scale (HADS), 0-24 on the depression and anxiety part respectively. Lower score=better
• Cognitive performance [Baseline and 3 year follow-up]: Assessed with the Montreal Cognitive Assessment (MoCA), 0-25, higher score = better
• Motivation [Baseline and yearly follow-ups for 3 years]: Assessed with the Behavioural Regulation in Exercise Questionnaire (BREQ 4), a 28-item survey that measures exercise motivation. The questionnaire uses a 7-point Likert scale, ranging from one to seven. Maximum 196. Higher scores = higher motivation
• Self-efficacy [Baseline and yearly follow-ups for 3 years]: Assessed with the Self-efficacy and motivation for exercise/physical activity (ESES). 10 questions rated on a 4 point Likert scale. Maximun 40 points, higher scores= better self-efficacy
• Physical activity history and preferences, [Baseline]: Self-made questions on physical activity history and preferences
• Self assessed cognitive function [Baseline and yearly follow-ups for 3 years]: Assessed with Executive function questionnaire (DEX), 20 items scored 1 to 4, max 80, more scores= worse
• Non-Motor Symptoms [Baseline and yearly follow-ups for 3 years]: Non-Motor Symptoms Questionnaire (NMSQ), 30 questions with yes/no answer. More yes answers = more non-motor symptoms
• Walking ability- self rated [Baseline and yearly follow-ups for 3 years]: WALK-12G questionnaire, 0 and 42 points, with higher scores reflecting greater perceived walking difficulties (higher=worse)
• Freezing of gait - self-assessed [Baseline and 3 year follow-up]: Freezing of gait questionnaire (FOGQsa), 6 questions/items, scored 1 to 5 (higher=worse)
• Balance confidence [Baseline and yearly follow-ups for 3 years]: Activities specific balance confidence (ABC scale), 16 items which is scored 1 to 10 and then divided by 16. 0-100%, higher % = better
• Fatigue [Baseline and yearly follow-ups for 3 years]: Parkinson's Fatigue Scale (PFS-16), 16 items scored 1 to 5 from strongly disagree to strongly agree . more points/score= worse.
• Disability [Baseline and 3 year follow-up]: World health organization (WHO) disability assessment schedule (Whodas 2.0), 12 self-assessed questions (12 to 60) more points=worse
• Sleep [Baseline and 3 year follow-up]: Scales for Outcomes in Parkinson's disease - Sleep (SCOPA-SLEEP), 4 parts, A-2 questions, B-5 questions , C-1 question and D- 6 questions. Higher= worse
• Self-rated pain [Baseline and yearly follow-ups for 3 years]: Assessed with visual analog scale, VAS from 0 to 100
• Health related quality of life [Baseline and yearly follow-ups for 3 years]: Parkinson's Disease Questionnaire (PDQ39). The Parkinson's Disease Questionnaire (PDQ-39) assesses how often people with Parkinson's experience difficulties across 8 dimensions of daily living (mobility, activities of daily living, emotional well-being, stigma, social support, cognition, communications and bodily discomfort). The sum score is as a percentage score ranging between 0 and 100. Higher is better
• Wellbeing [Baseline and yearly follow-ups for 3 years]: The WHO- Five Well-Being Index (WHO-5), 5 questions ranging from 0 to 5, 0-25, higher=better
• Nutrition [Baseline and 3 year follow-up]: Mini Nutritional Assessment, max 14. higher = better
• Socioeconomic status [Baseline]: Education and income level.

Sex: All, ages: 18 Years to any

Inclusion Criteria:

* People diagnosed with idiopathic Parkinson's disease
* Hoehn \& Yahr 1 to 4

Exclusion Criteria:

* Hoehn \& Yahr 5 (i.e. wheelchair bound or bedridden unless aided)
* Unable to perform critical physical activity and clinical assessments

• Erika Franzén, Principal investigator, Karolinska Institutet