Objective: To develop recommendations of ways to improve treatment burden and capacity in Parkinson’s disease (PD)

Background: Our research has identified potentially modifiable factors of treatment burden (workload of healthcare) and capacity (ability to manage treatment burden) in people with Parkinson’s (PwP) and their caregivers. These include challenges attending appointments, poor interactions with healthcare professionals, unsatisfactory information provision, difficulties managing medications, and problems enacting personal life adaptations. Addressing these factors could improve healthcare outcomes and quality of life for PwP and their caregivers.

Method: A qualitative study involving focus group discussion with a purposive sample of PwP, caregivers and healthcare professionals was conducted. Online focus groups were held and data analysed thematically.

Results: Three focus group discussions including a total of 11 participants (3 PwP, 1 caregiver, and 7 healthcare professionals) were conducted. Recommendations of ways to improve the key issues of treatment burden and capacity in PD were categorised into four interlinked themes: 1) Increasing visibility of PD, 2) Improving availability and organisation of healthcare services, 3) Improving interactions with healthcare professionals and information provision, and 4) Embracing the role of technology. For PwP and caregivers, the positive labelling of PD could help prioritise access to healthcare professionals. At an individual provider level, clear communication, expectation setting, and appropriate signposting to information and available services from healthcare professionals based on individuals’ needs and preferences could be beneficial. At a system level, increasing education and awareness about the complexity of PD, flexible appointment structures, improving communication between healthcare services, access to shared medical online records, and development of integrated care systems and single-point of access could improve the experiences of PwP and caregivers.

Conclusion: The focus groups identified potentially important areas where change at the individual and/or system level might reduce treatment burden and enhance capacity for PwP and caregivers. The wider utilisation of readily available resources and support from Parkinson’s UK by PwP, caregivers, and healthcare professionals could be an important first step.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/multi-stakeholder-focus-group-study-to-develop-recommendations-of-ways-to-improve-treatment-burden-and-capacity-in-parkinsons-disease/