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2019 UK Parkinson's Audit - Patient Reported Experience Measure (PREM)

Population Size

8,247

People

Population Size statistic card

Years

2019 - 2019

Years statistic card

Associated BioSamples

None/not available

Associated BioSamples statistic card

Geographic coverage

United Kingdom

Geographic coverage statistic card

Lead time

2-4 weeks

Lead time statistic card

Summary

The dataset contains data provided by 8247 people affected by Parkinson's (or by their carer on their behalf) attending 451 services participating in the audit on their experiences of the whole of their Parkinson's service.

Documentation

The UK Parkinson’s Audit assesses care provided to people with Parkinson's by a range of clinical specialties against evidence-based guidelines. The audit is open to services across the UK - secondary care (non-acute) and community services.

The audit includes a Patient Reported Experience Measure (PREM) which takes the form of a patient questionnaire which can be completed by any individual who attends one of the services (elderly care, neurology, physiotherapy, occupational therapy and speech and language therapy) participating in the audit. The questionnaire can be completed by the person with Parkinson’s or by a carer on their behalf. No patient identifiers are collected.

The PREM questions cover the individual’s experiences of the whole of their Parkinson’s service, not only the specialty which has handed them the questionnaire to complete.

The questionnaire is completed and sealed by the participant - the service does not have sight of the completed questionnaire. Each service must return at least ten questionnaires in order for their PREM data to be included in the analysis.

The 2019 audit received 8,247 completed PREM questionnaires from 451 (77.7%) of the participating services.

The data is available by UK Parkinson’s Excellence Network region. The UK Parkinson's Excellence Network is a network of health and social care professionals working to improve Parkinson's services administered with support from Parkinson’s UK. Professionals can join the Network to access resources, increase their knowledge of Parkinson's and collaborate with people affected by Parkinson's to transform health and care services.

The audit is the recognised quality improvement tool for the Excellence Network, providing an important baseline against which progress can be measured, informing national, regional and local service improvement priorities and plans to achieve better services for people living with the condition.

The regions are:

England: Cheshire and Merseyside East of England East Midlands Greater Manchester, Lancashire and South Cumbria London North East and Cumbria Peninsula South East Coast South West Thames Valley Wessex West Midlands Yorkshire and Humber

Scotland: North Scotland South and East Scotland West Scotland

Northern Ireland: Northern Ireland

Wales: North and Mid Wales South Wales

Other: Guernsey Isle of Man Republic of Ireland

Information about the regions can be found here: https://www.parkinsons.org.uk/professionals/local-parkinsons-excellence-network-groups

Dataset type

Health and disease

Dataset sub-type

Not applicable

Dataset population size

8247

Keywords

Observations

Observed Node

Disambiguating Description

Measured Value

Measured Property

Observation Date

Persons

8247 patient cases are included submitted by 451 (77.7%) of the services participating in the 2019 UK Parkinson's Audit.

8247

Count

30 Sep 2019

Provenance

Purpose of dataset collection

Audit

Source of data extraction

Paper-based

Collection source setting

Secondary care - Outpatients, Community

Patient pathway description

The data covers an individual's experience of their whole Parkinson's service - the current service being visited, but also the experience at diagnosis and whilst an inpatient (where relevant) throughout their lifetime living with Parkinson's.

Image contrast

Not stated

Biological sample availability

None/not available

Structural Metadata

Details

Publishing frequency

Static

Version

1.0.0

Modified

08/10/2024

Distribution release date

31/01/2020

Citation Requirements

Parkinson's UK

Coverage

Start date

01/05/2019

End date

30/09/2019

Time lag

Not applicable

Geographic coverage

United Kingdom

Minimum age range

20

Maximum age range

99

Follow-up

Unknown

Accessibility

Language

en

Controlled vocabulary

LOCAL

Format

Text

Data Access Request

Dataset pipeline status

Not available

Time to dataset access

2-4 weeks

Access method category

Varies based on project

Access service description

The audit team at Parkinson's UK will respond to all requests for access to this data within 5 working days.

Jurisdiction

GB-GB

Data use limitation

General research use

Data Controller

Parkinson's UK

Dataset Types: Health and disease


Collection Sources: Secondary care - Outpatients, Community

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