Objective: To explore experiences of treatment burden and capacity in Parkinson’s and identify potentially modifiable factors that can improve this

Background: Treatment burden, the workload of healthcare that patients must complete, and the ability (capacity) to manage it is poorly researched among people with Parkinson’s (PwP) and their caregivers. Yet, people with other long-term conditions who have high treatment burden are at risk of poor health outcomes.

Method: Individual semi-structured interviews were conducted with PwP and caregivers recruited from Parkinson’s outpatient clinics. Interviews were audio-recorded following written consent and transcribed verbatim. Data were analysed using thematic analysis.

Results: Seventeen participants (9 PwP, 8 caregivers (4 PwP-caregiver couples); mean age = 73 years) with Parkinson’s Hoehn and Yahr stages 1-4, living at home on their own (N=3) or with a spouse (N=14) were interviewed. PwP and caregivers experienced higher treatment burden with issues organising and attending healthcare appointments, poor interactions with healthcare professionals, difficulty managing prescriptions and polypharmacy, dissatisfaction with information provision, and need for personal life adaptations such as exercise and dietary changes. Treatment burden was closely interlinked with capacity. The ability to drive, access to car or technology, higher health literacy, use of prescription delivery services, pill devices or reminders, proximity of living location to healthcare services, personal coping strategies, financial capacity, and presence of practical and emotional support from social networks influenced the capacity of PwP and caregivers to manage the treatment burden. The progressive and worsening severity of Parkinson’s symptoms such as increasing tremor, slowness of movement, poor dexterity, fatigue, deteriorating mobility and memory issues can worsen the treatment burden or reduce capacity in Parkinson’s.

Conclusion: Treatment burden is experienced by PwP and caregivers. Addressing issues with frequency of appointments, improving interactions with healthcare professionals with a focus on patient-centred care, continuity of care and access to healthcare services, reducing polypharmacy, and providing information based on personal preferences may prevent poor health outcomes in Parkinson’s.

« Back to 2022 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/a-qualitative-study-exploring-the-treatment-burden-and-capacity-of-people-with-parkinsons-and-their-caregivers/