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UK Renal Registry - Your Health Survey dataset
Population Size
3,200
People
Years
2016
Associated BioSamples
None/not available
Geographic coverage
United Kingdom
England
Lead time
Not applicable
Summary
Patient-level data for adults with CKD who are under the care of NHS hospital renal centres in England. The data are collected using the 'Your Health Survey', which includes EQ5D-5L, POS-S Renal and PAM.
Documentation
The dataset contains self-reported patient-level data for adults with chronic kidney disease (CKD) who are under the care of NHS hospital renal centres in England. The data are collected using a survey called 'Your Health Survey' that includes identifiable information, socio-demographic information, a quality of life measure (EQ5D-5L), symptom measure (POS-S Renal) and patient activation measure (PAM). In 2016–2017 over 3,000 Your Health Surveys were collected by the UKRR as part of the quality improvement project ‘Transforming participation in chronic kidney disease’ and in 2018 ‘Transforming participation 2’ used the surveys to measure a coaching intervention in over 200 patients. See here for further information: https://renal.org/audit-research/data-permissions/data/ukrr-ckd-patient-measures-dataset/pam-and-prom-data
Dataset type
Health and disease
Dataset sub-type
Not applicable
Dataset population size
3200
Keywords
Kidney, Chronic kidney disease (disorder), Patient reported outcomes, PROMS, Patient activation, PAM, Renal, Quality of life, Renal replacement therapy, RRT, kidney replacement therapy, KRT, Person centred care, long term medical conditions, Personalised care, UK Renal Registry
Observations
Observed Node | Disambiguating Description | Measured Value | Measured Property | Observation Date |
|---|---|---|---|---|
Persons | 3200 | Count | 04 Jan 2016 |
Provenance
Source of data extraction
Paper-based
Collection source setting
Clinic, Community, Secondary care - Outpatients
Patient pathway description
The TPCKD data were collected from more than 3, 000 patients with CKD, including those on KRT, who were being treated at 10 renal centres in England between 2016 and 2018. The TP2 programme collected data from more than 200 patients with CKD, not on KRT, being treated at 4 renal centres in England in 2018.
Image contrast
Not stated
Biological sample availability
None/not available
Structural Metadata
Details
Publishing frequency
Irregular
Version
1.0.0
Modified
08/10/2024
Distribution release date
31/01/2019
Citation Requirements
UK Renal Registry, The Renal Association
Coverage
Start date
04/01/2016
Time lag
2-6 months
Geographic coverage
United Kingdom, England
Minimum age range
18
Maximum age range
150
Follow-up
6 - 12 Months
Accessibility
Language
en
Controlled vocabulary
LOCAL
Format
csv or xlsx or sas7bdat
Data Access Request
Dataset pipeline status
Not available
Time to dataset access
Not applicable
Access request cost
Charges may apply for new aggregate data and extracts of pseudonymous patient level data. The charges are to recover the costs of managing the application process and preparing extracts of data. The costs depend on the level of service required from the UKRR and whether this is limited to a simple extract of data, or requires additional input such as methodological or statistical support. The UKRR can advise on costs once the expression of interest is received and applicants may also be requested to complete a costing form.
Access method category
Direct access
Access service description
Data are released to researchers who have successfully gone through the UKRR's data application process. Prior to any data sharing with successful applicants, a fixed term data sharing agreement (DSA) is drawn up between the Renal Association and the recipient. This specifies the scope of the analyses permitted, the data items to be shared, the frequency of the data sharing, the names of the researchers and the time limit beyond which data must be destroyed.
Jurisdiction
GB-GB
Data use limitation
General research use
Data use requirements
Ethics approval required,Geographical restrictions,Project-specific restrictions,Time limit on use,User-specific restriction,Not for profit use,Institution-specific restrictions
Data Controller
The Renal Association