The Parkinson’s Real-World Impact Assessment (PRISM) Study: A European Survey of the Burden of Parkinson’s Disease in Patients and their Carers

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.

Sexual Dysfunctions in Parkinson’s Disease and Their Influence on Partnership—Data of the PRISM Study

“…We analyzed the dataset from The Parkinson's Real-world Impact assesSMent (PRISM) study [19], which is publicly available after free online registration (https://prism.bial.com (accessed on 18 August 2021)).…”

“…The study design was published previously in detail [ 19 ]. In brief, PRISM was an international, observational, cross-sectional survey designed by an international scientific committee in collaboration with The CureParkinson’s Trust (a United Kingdom-based research-driven charity).…”

Patient-Related Factors Influencing Caregiver Burden in Parkinson’s Disease Patients: Comparison of Effects Before and After Deep Brain Stimulation

“…Despite results from observational studies, a causal effect of DBS on caregiver burden has not been established. Randomized controlled trials (RCTs) focusing on caregiver burden are not feasible in the setting, and current observational studies carry inherent selection bias and information bias [4]. Although RCTs are widely considered to be the gold standard in determining causal structures, emulation of such trials may model underlying causal structures as well [27].…”

“…Given the variety and complexity of PD symptoms, a caregiver role may be highly demanding and cause a high burden for themselves. This may have a negative influence on their mental and general health [3], and social life [2][3][4], which in turn negatively influences the effectiveness and tolerability of caregiving [5].…”

Online Mindfulness-Based Cognitive Therapy for People with Parkinson’s Disease and Their Caregivers: a Pilot Study

“…Caregivers of people with PD experience mild-to-moderate caregiver burden, emotional difficulties, and disruption of their social lives (Boersma et al, 2017 ; Martinez-Martin et al, 2015 ; Mosley et al, 2017 ; Tolosa et al, 2021 ). Over half (65%) are women and spend an average of 22 h per week supporting their partners with PD (Tolosa et al, 2021 ). Caregivers desire access to emotional support and education regarding disease progression and management of PD motor and non-motor symptoms (Boersma et al, 2017 ).…”