What are the modifiable factors of treatment burden and capacity among people with Parkinson's disease and their caregivers: A qualitative study.

BACKGROUND: People with long-term conditions must complete many healthcare tasks such as take medications, attend appointments, and change their lifestyle. This treatment burden and ability to manage it (capacity) is not well-researched in Parkinson's disease. OBJECTIVE: To explore and identify potentially modifiable factors contributing to treatment burden and capacity in people with Parkinson's disease and caregivers. METHODS: Semi-structured interviews with nine people with Parkinson's disease and eight caregivers recruited from Parkinson's disease clinics in England (ages 59-84 years, duration of Parkinson's disease diagnosis 1-17 years, Hoehn and Yahr (severity of Parkinson's disease) stages 1-4) were conducted. Interviews were recorded and analyzed thematically. RESULTS: Four themes of treatment burden with modifiable factors were identified: 1) Challenges with appointments and healthcare access: organizing appointments, seeking help and advice, interactions with healthcare professionals, and caregiver role during appointments; 2) Issues obtaining satisfactory information: sourcing and understanding information, and satisfaction with information provision; 3) Managing medications: getting prescriptions right, organizing polypharmacy, and autonomy to adjust treatments; and 4) Lifestyle changes: exercise, dietary changes, and financial expenses. Aspects of capacity included access to car and technology, health literacy, financial capacity, physical and mental ability, personal attributes and life circumstances, and support from social networks. CONCLUSIONS: There are potentially modifiable factors of treatment burden including addressing the frequency of appointments, improving healthcare interactions and continuity of care, improving health literacy and information provision, and reducing polypharmacy. Some changes could be implemented at individual and system levels to reduce treatment burden for people with Parkinson's and their caregivers. Recognition of these by healthcare professionals and adopting a patient-centered approach may improve health outcomes in Parkinson's disease.

Evaluating the feasibility and acceptability of virtual group exercise for older adults delivered by trained volunteers: the ImPACt study protocol.

INTRODUCTION: Physical activity is important for healthy ageing. Despite strong evidence on the benefits of physical activity for health and well-being, physical inactivity remains a significant problem among older adults. This study aims to determine the feasibility and acceptability of implementing an online volunteer-led group exercise for older adults. METHODS: A quasi-experimental mixed-methods approach will be used in this study. A training programme will be developed to train volunteers to deliver online group exercises to older adults aged >65 years (n=30). The primary outcome is the feasibility of implementing the intervention. This will be assessed by the number of volunteers recruited, trained, and retained at the end of the study, and the number of exercise sessions delivered and completed by participants. Secondary outcomes include physical activity levels measured using the Community Health Model Activities Programme for Seniors questionnaire, Barthel Index, EQ-5D-5L as a measure of health-related quality of life, SARC-F to determine sarcopenia status, and PRIMSA-7 to determine frailty status. Outcomes will be measured at baseline and at 6 months.Qualitative interviews will be conducted with volunteers(n=5), older adults (n=10) and family members (n=5) to explore their views on the intervention. ANALYSIS: Simple descriptive statistics will be used to describe participant characteristics, the feasibility of the study and the impact of the intervention on health outcomes. Parametric(t-test) or non-parametric(Mann-Whitney U test) statistics will be used to analyse continuous variables. χ2 test will be used for categorical variables. Qualitative data will be analysed using an inductive thematic analysis approach. ETHICS AND DISSEMINATION: This study received ethical approval from the University of Southampton Faculty of Medicine Ethics Committee and Research Integrity and Governance committee (ID: 52 967 .A1). Study findings will be made available to service users, voluntary organisations and other researchers who may be interested in implementing the intervention. TRIAL REGISTRATION NUMBER: NCT04672200.