Parkinson's disease Nervous System Diseases Parkinson disease
Conditions
Interventions
This is a cross-sectional study designed to describe the variability in stage and needs of people with parkinsonism in the catchment area of the Royal United Hospitals Bath NHS Foundation Trust, UK, a
Sponsors
University of Bristol
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: Patient participants: 1. Diagnosis of parkinsonism (including idiopathic Parkinson’s disease, progressive supranuclear palsy, corticobasal degeneration, multisystem atrophy, dementia with Lewy bodies, vascular parkinsonism), made by a movement disorder specialist 2. Willing to participate and have the ability to provide informed consent to participate or, where unable to do so due to cognitive impairment, availability of a close friend, or relative to act as a personal consultee. 3. Aged > 18 years Caregiver participants: 1. Provide informal care or support for a patient with parkinsonism and, where a patient has more than one informal caregiver, be considered by the patient to be their primary caregiver 2. Willing to participate and have the ability to provide informed consent to participate 3. Aged >18 years
Exclusion criteria
Exclusion criteria: Patient participants: 1. Drug-induced parkinsonism 2. Lack capacity to consent to participate and do not have anyone who can be a consultee to provide advice regarding the patient’s wishes and views. 3. Current medical, cognitive or psychosocial issue or co-enrolment in other studies that, in the opinion of the investigators, would interfere with adherence to study requirements. Caregiver participants: 1. Professional carers who are paid to deliver care
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 1. Patient participants: quality of life measured by the Parkinson's Disease Questionnaire-39 at a single timepoint 2. Patient participant (representative-completed): quality of life/wellbeing measured by the ICEpop CAPability measure for Older people, proxy version (ICECAP-O proxy) at a single timepoint 3. Caregiver participants: quality of life measured by the Parkinson's Disease Questionnaire-carer at a single timepoint | — |
Secondary
| Measure | Time frame |
|---|---|
| 1. Patient participants: non-motor symptom score measured by the Non-Motor Symptom Questionnaire (NMSQ) at a single timepoint 2. Patient participants: (representative completed): neuropsychiatric symptoms measured using the Neuropsychiatric Inventory Questionnaire (NPI-Q) at a single timepoint 3. Caregiver participants: caregiver burden measured using the Zarit Burden Inventory at a single timepoint | — |
Countries
England, United Kingdom
Outcome results
None listed