A mixed-methods study to explore the modifiable aspects of treatment burden in Parkinson’s disease and develop recommendations for improvement

Abstract

Background:
People with Parkinson’s (PwP) and their caregivers have to manage multiple daily healthcare tasks (treatment burden). This can be challenging and may lead to poor health outcomes.

Objective:
To identify the extent and key modifiable factors of treatment burden, and develop recommendations to improve the treatment burden in Parkinson’s disease (PD).

Methods:
This was a mixed-methods study, involving 1) a cross-sectional survey for PwP and caregivers in the UK to determine the extent and associations of treatment burden using the Multimorbidity Treatment Burden Questionnaire (MTBQ), followed by 2) focus group discussions with key stakeholders to discuss the survey findings and develop recommendations.

Results:
160 PwP (mean age=68 years) and 30 caregivers (mean age=69 years) completed the national surveys. The surveys found that 21% (N=34) of PwP and 50% (N=15) of caregivers reported high treatment burden using the MTBQ. Higher treatment burden in PwP was significantly associated with advancing PD severity, frailty, higher number of non-motor symptoms, and higher frequency of medications (>3 times/day). Caregivers with higher treatment burden were more likely to care for someone with memory issues, had lower mental well-being scores and higher caregiver burden. Three online focus groups involved 11 participants (3 PwP, 1 caregiver and 7 healthcare professionals) recruited from the South of England. Focus group discussions resulted in recommendations to reduce treatment burden including improving communication, clear expectation setting with appropriate signposting from healthcare professionals, increasing education and awareness of PD complexity, increasing flexibility of appointment structures, increasing access to healthcare professionals, and embracing the role of technology.

Conclusions:
Treatment burden is common amongst PwP and caregivers and can be identified in a clinical setting using the MTBQ. There is a need for change at individual provider and system levels to recognise and minimise treatment burden to improve health outcomes in PD.

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Identifiers

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

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

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

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