Abstract
Background:A greater understanding of the everyday experiences of people with Parkinson’s disease (PD) and their carers may help improve clinical practice.Objective:The Parkinson’s Real-world Impact assesSMent (PRISM) study evaluated medication use, health-related quality of life (HRQoL) and the use of healthcare resources by people with PD and their carers.Methods:PRISM is an observational cross-sectional study, in which people with PD and their carers completed an online survey using structured questionnaires, including the Parkinson’s Disease Quality of Life Questionnaire (PDQ-39), Non-Motor Symptoms Questionnaire (NMSQuest) and Zarit Burden Interview (ZBI).Results:Data were collected from 861 people with PD (mean age, 65.0 years; mean disease duration, 7.7 years) and 256 carers from six European countries. People with PD reported a large number of different co-morbidities, non-motor symptoms (mean NMSQuest score, 12.8), and impaired HRQoL (median PDQ-39 summary score, 29.1). Forty-five percent of people with PD reported at least one impulse control behaviour. Treatment patterns varied considerably between different European countries. Levodopa was taken in the last 12 months by 85.9% of participants, and as monotherapy by 21.8%. Carers, who were mostly female (64.8%) and the partner/spouse of the person with PD (82.1%), reported mild to moderate burden (mean ZBI total score, 26.6).Conclusions:The PRISM study sheds light on the lives of people with PD and those who care for them, re-emphasising the many challenges they face in everyday life. The study also provides insights into the current treatment of PD in Europe.
Highlights
Parkinson disease (PD) is the most common neurodegenerative movement disorder, with estimated prevalence and incidence rates in Europe of approximately 108‒257/100,000 and 11‒19/100,000 per year, respectively [1]
Of the 599 respondents who reached the end of the non-optional questions, a small proportion did not reply to all previous questions (PDQ-39, n=1; Q10, n=11; Q83, n=11)
The rate of hypertension observed in Parkinson’s Real-world Impact assesSMent (PRISM) (25.3%) was lower than what might be expected, since the overall prevalence of hypertension in adults has been estimated at 30‒45% increasing to >60% in people aged >60 years [23], and previous studies in people with Parkinson’s disease (PD) have reported a higher figure than that observed in PRISM (e.g. 41.1% in a study of a large Scottish primary care database [22])
Summary
Parkinson disease (PD) is the most common neurodegenerative movement disorder, with estimated prevalence and incidence rates in Europe of approximately 108‒257/100,000 and 11‒19/100,000 per year, respectively [1]. People with PD have to contend with increasing physical disability, a greater risk of dementia and depression, and treatment-related complications including dyskinesias and impulse control disorders [3,4,5,6,7,8], all of which can affect their health-related quality of life (HRQoL) [9]. A greater understanding of the everyday experiences of people with Parkinson’s disease (PD) and their carers may help improve clinical practice. METHODS: PRISM is an observational cross-sectional study, in which people with PD and their carers completed an online survey using structured questionnaires, including the Parkinson’s Disease Quality of Life Questionnaire (PDQ-39), Non-Motor Symptoms Questionnaire (NMSQuest) and Zarit Burden Interview (ZBI). The study provides insights into the current treatment of PD in Europe
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