• Nobutaka Hattori, Yoshiko Okada, Yayoi Kawata, Yoshihiko Furusawa, Takumi Imai, Hisako Yoshida, Mihoko Ota, Masaki Arai, Ayumi Shintani, and Jovelle Fernandez.
• Department of Neurology, Juntendo University, Tokyo, Japan.
• Patient Prefer Adher. 2023 Jan 1; 17: 122112351221-1235.

ObjectiveThe coronavirus disease 2019 (COVID-19) pandemic changed the lives of patients with Parkinson's disease (PD) and their caregivers. This study aimed to investigate changes in patient behavior and PD symptoms and their effect on caregiver burden resulting from the COVID-19 pandemic in Japan.MethodsThis nationwide, observational, cross-sectional survey included patients with self-reported PD and caregivers (members of the Japan Parkinson's Disease Association). The primary objective was to evaluate changes in behaviors, self-assessed PD symptoms, and caregiver burden from pre-COVID-19 (February 2020) to post-national state of emergency (August 2020 and February 2021).ResultsResponses from 1883 patients and 1382 caregivers from 7610 distributed surveys were analyzed. Mean (standard deviation) age of patients and caregivers was 71.6 (8.2) and 68.5 (11.4) years, respectively; 41.6% of patients had a Hoehn and Yahr (HY) scale of 3. Patients (>40.0%) reported decreased frequency of going out. Most patients (>70.0%) reported no change in treatment visit frequency, voluntary training, or rehabilitation and nursing care insurance services. Symptoms worsened for approximately 7-30% of patients; the proportion with HY scale 4-5 increased from pre-COVID-19 (25.2%) to February 2021 (40.1%). Aggravated symptoms included bradykinesia, walking, gait speed, depressed mood, fatigue, and apathy. Caregivers' burden increased because of patients' worsened symptoms and reduced time going out.ConclusionControl measures during infectious disease epidemics should consider that patients' symptoms may worsen; therefore, patient and caregiver support is needed to reduce burden of care.© 2023 Hattori et al.

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