03 April 2023
The National Confidential Enquiry into Patient Outcome and Death (NCEPOD), an organisation which uses peer review to perform qualitative reviews into a broad range of health outcomes, has been commissioned to undertake a study to review the quality of care in children and young people (0-24 years) with Juvenile Idiopathic Arthritis (JIA).
The NCEPOD JIA report has been commissioned because of long-standing concerns about delays in access to care and regional variation. The enquiry aims to gain access to national level data relating to disease prevalence and patterns of recognition, referral, diagnosis and treatment. Such data will inform the NCEPOD report and ideally drive improvement.
All providers of healthcare for young people with JIA/inflammatory arthritis across England, Wales and Northern Ireland will be asked to participate in the study.
Patient identification
Young people will be identified for inclusion in two ways:
- Via a nominated study contact (e.g. the rheumatology lead). This will enable the identification of young people from the outpatient community.
- Via the NCEPOD local reporter (a nominated contact within each Trust/Health Board who usually works in the clinical audit/governance department).
Data collection
Data for the study will be collected from a number of sources, including:
- Young people and parent carer views through focus groups and online surveys
- Clinician and commissioner views through online surveys
- Organisational data from all healthcare organisations providing care to young people with JIA
- Clinical data on a sample of young people with JIA. Questionnaires will be sent to all teams providing rheumatology care to the young person in primary, community and secondary/tertiary care centres
- Case note review
BSR members in paediatric rheumatology have a vital role to play in the study:
- To act as a nominated study contact within each service providing JIA care
- To help identify young people for inclusion in the study
- To promote the project within the local MDT
- To complete any clinical questionnaires received as part of the peer review process
- To complete the on-line anonymous clinician survey
Data collection is due to start in spring/summer 2023, with questionnaires and case note requests following later in the year. The report is due for publication in late 2024. At the time of publication, a number of other quality improvement tools will also be made available.
If you would like to become involved in this study either as a case notes reviewer; with the online clinician survey; or with the dissemination of information to young people, parent carers and colleagues working in this field please contact us at arthritis@ncepod.org.uk.
Further information will be made available as soon as it is ready on the NCEPOD website at: https://www.ncepod.org.uk/JIA.html