A cross-sectional study exploring the treatment burden in people with parkinson's and their caregivers

Abstract Introduction Treatment burden is the workload of healthcare and its impact on patient well-being and functioning. High treatment burden in other long-term conditions is associated with poor health outcomes. This study aimed to determine the extent and levels of treatment burden among people with Parkinson’s (PwP) and their caregivers, and explore modifiable factors. Methods A cross-sectional survey using the Multimorbidity Treatment Burden Questionnaire (MTBQ) to measure treatment burden was conducted among adults (age >18 years) diagnosed with Parkinson’s or self-identified caregivers of someone with Parkinson’s. Factors associated with medium/high treatment burden levels on the MTBQ were analysed using logistic regression. Results 190 valid responses were received: 160 PwP (mean age = 68years, 52% female), 30 caregivers (mean age = 69years, 73% female) with or caring for PwP with all stages of Parkinson’s severity (Hoehn and Yahr staging). Nearly half of PwP had frailty or multimorbidity. High treatment burden was reported by 21% of PwP and 50% of caregivers. Lifestyle changes was the most difficult aspect of treatment burden for both PwP and caregivers. Arranging appointments, seeing many healthcare professionals and taking multiple medications frequently contributed to the treatment burden reported by PwP and caregivers. Medium/high treatment burden was associated with PwP who were frail, had a higher number of non-motor symptoms, and took medications more than three times a day. Worsening Parkinson’s severity and limited health literacy had increased odds of medium/high treatment burden levels in PwP. Female caregivers, those caring for someone with Parkinson’s who experienced memory issues, and caregivers with poorer mental health well-being scores were associated with medium/high treatment burden. Conclusions PwP and caregivers experienced substantial treatment burden. Providing them support with enacting recommended lifestyle changes, streamlining healthcare appointments, addressing polypharmacy and frequency of medications, and improving health literacy may help reduce the treatment burden in Parkinson’s.