Parkinson's disease patients' needs during the COVID‐19 pandemic in a red zone: A framework analysis of open‐ended survey questions

Abstract

Background and purpose During the first phase of the COVID‐19 pandemic, a lockdown was imposed in Italy. The aim of this study was to investigate the perceptions, feelings and unmet needs of Parkinson's disease (PD) patients who experienced the 2‐month lockdown in a “red zone” in the northern part of Italy during the COVID‐19 outbreak. Methods The study had a descriptive design that used a cross‐sectional online survey which included open‐ended questions to elicit responses on the participant's feelings concerning their risk of contracting coronavirus, how their physical activity had changed, and their personal needs, dictated by their condition, which were not met in this pandemic period as compared to previous periods. Demographic data were analysed using descriptive frequencies, while the open‐ended questions were analysed using thematic framework analysis. Results The study included 103 participants (63 men/40 women [61.17 vs. 38.83%]). Framework analysis led to the identification of four main themes: (i) fearing the risk of contracting coronavirus; (ii) reduction of physical activity; (iii) perception of the risk of not being able to access outpatient clinics or support services; and (iv) negative experiences of the important reduction in socialization. The perceptions of unmet needs appeared to be greater than the actual experience, particularly for the reduction in physical activity and the interruption of contacts with the neurologist and other specialists. Conclusions This study highlights how perceptions and actual experience shape the meaning of living with PD during the pandemic. Worth noting is the divergence between perceptions and real impact in some aspects of the COVID‐19 outbreak.

COVID-19 and Physical Activity Behaviour in People with Neurological Diseases: A Systematic Review

“…Twelve studies questioned whether their physical activity and/or sports Questionnaires (IPAQ) and Physical Activity Scale for Individuals with Physical Disabilities (PASIPD) results assessed before and after the lockdown (Marco-Ahulló et al, 2021 ; Shalash et al, 2020 ) Three studies included healthy controls Brown et al, 2020 ; di Stefano et al, 2020 ; Shalash et al, 2020 ), but two of them compared physical activity levels of healthy controls and people with neurological diseases (di Stefano et al, 2020 ; Shalash et al, 2020 ). Two studies also included caregivers (Borges-Machado et al, 2020 ; Cavallieri et al, 2021 ) Answers were obtained from caregivers of dementia patients, whereas in the study that included persons with Parkinson’s disease, the caregivers were asked when patients could not respond (Borges-Machado et al, 2020 ; Cavallieri et al, 2021 ). Brown et al included participants with and without COVID-19 and presented subgroup analysis for the baseline characteristics, but they provided data for information on physical activity or exercise of participants without COVID-19 (Brown et al, 2020 ).…”

“…Three studies used the IPAQ to assess physical activity levels 6,22,25 . In the 11 studies, a constructed survey was used to determine whether physical activity/sport activities/exercise has changed during the pandemic (Borges-Machado et al, 2020 ; Brown et al, 2020 ; Cavallieri et al, 2021 ; Kalron et al, 2021 ; Kumar et al, 2021 ; Prada et al, 2020 ; Sanchez-Larsen et al, 2020 ; Schirinzi et al, 2020 ; Song et al, 2020 ; van de Venis et al, 2020 ; van der Heide et al, 2020 ); (Schirinzi et al, 2020 ). used both IPAQ and structured surveys.…”

The impact of a coronavirus disease 2019 pandemic-related interruption of regular physical rehabilitation on functional abilities in a patient with two chronic neurological diseases: a case report

“…A report from Italy evaluated the needs of patients with PD during the COVID-19 pandemic [39]. Among others, patients reported a reduction of physical activity, perception of the risk of not being able to access outpatient clinics or support services, and negative experiences of the reduction in socialization.…”

Can SARS-CoV-2 Infection Lead to Neurodegeneration and Parkinson’s Disease?

“…It was found that 103 PD patients reported four main problems in the first Italian lockdown: 1. fear of contracting corona, 2. reduction of physical activity, 3. not being able to access support services and clinics and 4. reduction of socialization [ 148 ]. There was an objective reduction of physical activity, measured by a smartphone application, as most PD patients failed to meet 30 min of activity per day [ 149 ].…”