Managing Parkinson’s during the COVID‐19 pandemic: Perspectives from people living with Parkinson’s and health professionals

Soilemezi, Dia; Roberts, Helen; Navarta‐Sánchez, María Victoria; Kunkel, Dorit; Ewings, Sean; Reidy, Claire; Portillo, Mari Carmen

doi:10.1111/jocn.16367

Cited by 9 publications

(13 citation statements)

References 37 publications

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“…It has been shown that over a third of people with PD (PwP; 36.3%, n = 45) taking three or more doses of medication daily report poor adherence ( 6 ). Modification of complex medication regimens often follows short, infrequent appointments with a clinician, which have been especially affected by the COVID-19 pandemic ( 7 , 8 ). In addition, patient-clinician interactions are influenced by patient recall and performance bias, and clinicians observe PwP at different stages (“ON,” “OFF” periods) of their medication regimen.…”

Section: Introductionmentioning

confidence: 99%

Feasibility and usability of a digital health technology system to monitor mobility and assess medication adherence in mild-to-moderate Parkinson's disease

et al. 2023

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IntroductionParkinson's disease (PD) is a neurodegenerative disorder which requires complex medication regimens to mitigate motor symptoms. The use of digital health technology systems (DHTSs) to collect mobility and medication data provides an opportunity to objectively quantify the effect of medication on motor performance during day-to-day activities. This insight could inform clinical decision-making, personalise care, and aid self-management. This study investigates the feasibility and usability of a multi-component DHTS to remotely assess self-reported medication adherence and monitor mobility in people with Parkinson's (PwP).MethodsThirty participants with PD [Hoehn and Yahr stage I (n = 1) and II (n = 29)] were recruited for this cross-sectional study. Participants were required to wear, and where appropriate, interact with a DHTS (smartwatch, inertial measurement unit, and smartphone) for seven consecutive days to assess medication adherence and monitor digital mobility outcomes and contextual factors. Participants reported their daily motor complications [motor fluctuations and dyskinesias (i.e., involuntary movements)] in a diary. Following the monitoring period, participants completed a questionnaire to gauge the usability of the DHTS. Feasibility was assessed through the percentage of data collected, and usability through analysis of qualitative questionnaire feedback.ResultsAdherence to each device exceeded 70% and ranged from 73 to 97%. Overall, the DHTS was well tolerated with 17/30 participants giving a score > 75% [average score for these participants = 89%, from 0 (worst) to 100 (best)] for its usability. Usability of the DHTS was significantly associated with age (ρ = −0.560, BCa 95% CI [−0.791, −0.207]). This study identified means to improve usability of the DHTS by addressing technical and design issues of the smartwatch. Feasibility, usability and acceptability were identified as key themes from PwP qualitative feedback on the DHTS.ConclusionThis study highlighted the feasibility and usability of our integrated DHTS to remotely assess medication adherence and monitor mobility in people with mild-to-moderate Parkinson's disease. Further work is necessary to determine whether this DHTS can be implemented for clinical decision-making to optimise management of PwP.

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Section: Introductionmentioning

confidence: 99%

Feasibility and usability of a digital health technology system to monitor mobility and assess medication adherence in mild-to-moderate Parkinson's disease

et al. 2023

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“…Such research may be especially important for groups of people who felt vulnerable and isolated as a result of the pandemic. (Schaefer et al, 2020; Soilemezi et al, 2022; Subramanian et al, 2020).…”

Section: Discussionmentioning

confidence: 99%

Music Moves Me in More Ways Than One: An Online Survey Investigating the Everyday Use of Music among People with Parkinson's

Rose,

Poliakoff,

Young

et al. 2023

Music & Science

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Background Music has been used in interventions designed for people with Parkinson's (PwP) either to engage mechanisms involved in phenomena such as sensorimotor synchronization or as an integral part of the activity (e.g., dance). However, little research has been conducted concerning what music PwP use in everyday life and how and why this might differ based on situation/context. Methods We used an online survey to investigate what music PwP listen to, for which perceived reasons, and in which situations. In addition to demographic and Parkinson's-specific questions, we included standardized measures of quality of life, music and dance sophistication and bespoke items to explore music use. Results The sample ( N = 217, age range 20–88 years, Mean = 65.2, SD = 8.45) included 109 females (50%); 64% of participants reported a mild impact of Parkinson's on Activities of Daily Living. The top three uses of music were Aesthetic Appreciation (98%), Relaxation (92%), and Motivation (90%). The least popular category was using music for walking (36%). The duration of attentive listening was significantly higher for those who reported using music for managing their feelings than those who did not ( p < .01). Better quality of life was associated with higher participatory dance experience ( p < .001). Conclusion PwP listen to a wide range of music genres, most notably for enjoyment but also as a personalized “charge” and “re-charge” resource. Understanding the everyday use of music among PwP might facilitate the development of playlists and interventions to improve daily life for PwP.

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“…Many studies on social isolation came from COVID-19 research, showing the isolation and disruption of social networks and usual activities in PD during the COVID-19 pandemic 32–34. Few studies have examined social isolation or similar constructs before the COVID-19 era 30.…”

Section: Discussionmentioning

confidence: 99%

Social deprivation and exclusion in Parkinson’s disease: a cross-sectional and longitudinal study

Heimrich,

Schönenberg,

Prell

2023

BMJ Open

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ObjectiveTo describe prevalence and associated factors of social deprivation in people with Parkinson’s disease (PwPD).DesignCross-sectional and longitudinal cohort study.SettingData were taken from the Survey of Health, Ageing and Retirement in Europe (SHARE), a multidisciplinary, cross-national and longitudinal research project.ParticipantsCommunity-dwelling adults from waves 5 (2013, n=66 188) and 6 (2015, n=68 186) of the SHARE dataset. After longitudinal analyses, participants in wave 5 can be retrospectively divided into the following three subgroups: PwPD at wave 5 (n=559), people newly reported PD from wave 5 to wave 6 (prodromal PD; n=215) and people without PD (n=46 737).Outcome measuresThe prevalence and associated factors of social deprivation in PD, its impact on quality of life (QoL) and its onset within the course of PD.ResultsPwPD had higher indices for material and social deprivation than non-PD participants, and 20% of PwPD were at risk of social exclusion. Social deprivation alone accounted for 35% and material deprivation for 21% of QoL variance and remained significant predictors of QoL after adjustment for cofactors. Social deprivation and risk of social exclusion were already increased in people with prodromal PD, and accordingly preceded PD diagnosis in wave 6.ConclusionsFor the treatment of PD, we should consider the impact of social deprivation and exclusion on QoL and their association with mental and physical functioning. However, the relevance of social deprivation as a prodromal phenomenon requires further investigation.

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Managing Parkinson’s during the COVID‐19 pandemic: Perspectives from people living with Parkinson’s and health professionals

Cited by 9 publications

References 37 publications

Feasibility and usability of a digital health technology system to monitor mobility and assess medication adherence in mild-to-moderate Parkinson's disease

Feasibility and usability of a digital health technology system to monitor mobility and assess medication adherence in mild-to-moderate Parkinson's disease

Music Moves Me in More Ways Than One: An Online Survey Investigating the Everyday Use of Music among People with Parkinson's

Social deprivation and exclusion in Parkinson’s disease: a cross-sectional and longitudinal study

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