Tolosa, E;
Ebersbach, G;
Ferreira, JJ;
Rascol, O;
Antonini, A;
Foltynie, T;
Gibson, R;
... Lees, A; + view all
(2021)
The Parkinson's Real-World Impact Assessment (PRISM) Study: A European Survey of the Burden of Parkinson's Disease in Patients and their Carers.
Journal of Parkinson's Disease
, 11
(3)
pp. 1309-1323.
10.3233/JPD-212611.
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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.
| Type: | Article |
|---|---|
| Title: | The Parkinson's Real-World Impact Assessment (PRISM) Study: A European Survey of the Burden of Parkinson's Disease in Patients and their Carers. |
| Location: | Netherlands |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.3233/JPD-212611 |
| Publisher version: | https://doi.org/10.3233/JPD-212611 |
| Language: | English |
| Additional information: | This version is the author accepted manuscript. For information on re-use, please refer to the publisher's terms and conditions. |
| Keywords: | Caregivers, Europe, Parkinson’s disease, catechol o-methyltransferase inhibitors, comorbidity, dopamine agonists, levodopa, observational study, quality of life, surveys and questionnaires |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Clinical and Movement Neurosciences |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10129000 |
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