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

Abstract

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.

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Identifiers

ORCID for Helen C. Roberts: orcid.org/0000-0002-5291-1880

ORCID for Simon D.S. Fraser: orcid.org/0000-0002-4172-4406

ORCID for Kinda Ibrahim: orcid.org/0000-0001-5709-3867

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