Objective: To study a population representative Parkinson’s Disease (PD) patient cohort characterized with objective 6x24h home measurements using the Parkinson Kinetigraph (PKG, Global Kinetics). To assess the prevalence of objectively recorded motor fluctuations in PD and relate these result to self-ratings including e.g. health-related quality of life (HRQL).

Background: The prevalence of motor fluctuations in PD has been estimated to 65-90% based on subjective recall data and diaries. In Sweden, only 3-6% of PD patients are treated with DBS or infusion pumps and regional treatment variations are large. Better information about the prevalence of motor fluctuations and suboptimal treatment in the PD population is needed to improve care for PD patients.

Methods: WestPORTS recruits subjects from a randomly selected 25% of individuals with Parkinson’s disease (ICD G209) that visited any of eight major outpatient neurology or geriatrics clinics in West Sweden (population 1.7M) during 12 predefined months between Sept 2016 and April 2018. Baseline clinical and demographic data are collected along with a 6 x 24h PKG accelerometry recording. PKG recordings will be made yearly as long as subjects are alive and willing. Self-assessments are performed at the time of PKGs: PD Quality of life (PDQ8), Non Motor Symptom Questionnaire, EQ5D-5L, Patient Reported Outcome in Parkinson’s Disease (PRO-PD). The study is registered at ClinicalTrials.gov: NCT03130595.

Results: Preliminary PKG data (n=154, inclusion rate 60%) from the first two completed centers, of which one is the University Hospital, are presented and compared with retrospective data from clinically motivated recordings in patients suspected to have motor fluctuations (n=248). The PKG bradykinesia scores (BKS) in the randomly selected population were in median (range) 30.4 (14.2-66.9) and dyskinesia scores (DKS) 1.0 (0-26.1). Tremor time was >0.9% in 20% of the patients. These results differ from clinically motivated recordings where BKS was 23.0, p=0.014 and DKS was 3.0, p<0.0001.

Conclusions: This is the first systematic study of objective movement data obtained at home in a population representative PD patient cohort. Descriptive data, including health-related quality of life measures, from the full population will be available Q3 2018. Preliminary results indicate that patients in the population representative sample are significantly more hypokinetic than patients where PKGs were performed on clinical indications.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/west-sweden-parkinson-objective-measurement-registry-study-westports/