Data collection for study: Open Patient identification spreadsheet data collection: Open Clinical data collection: Open Organisational data collection: Not open Publication date: Late 2024
Aim
To review the quality of care in children and young adults (0-24 years) with Juvenile Idiopathic Arthritis (JIA).
Participation
All providers of healthcare across England, Wales and Northern Ireland, where children and young adults with JIA might be cared for. This will include acute, community and independent organisations. Primary care practices will be asked to participate where it is identified that a patient selected for inclusion in the study was under the care of their practice.
Data collection
The timeframe from which data will be sampled will be the 1st April 2021 – 31st March 2023.
Patient identification spreadsheets
Two patient identification spreadsheets will be used to identify children and young adults to include in the study – one to be completed by a study contact and one to be completed by the local reporter. Study contacts: Please provide the details of the last 50 children and young adults (aged 0-24 years) referred to the rheumatology service, up to the 31st March 2023, and no earlier than the 1st April 2021, where a diagnosis of JIA has been made. Local reporters: Please provide the details of all children and young adults (0-24 years) who presented to their organisation between 1st April 2021 – 31st March 2023 with at least one of the included ICD10 codes recorded in any position. Please include day case admissions and outpatient attendances where available.
Clinician questionnaires
Clinician questionnaires will be sent for a sample of children and young adults, where the diagnosis was made between the 1st April 2019 – 31st March 2023. Up to 15 patients per hospital will be sampled for inclusion. A questionnaire will be sent to the rheumatologist responsible for the ongoing care of the patient. In addition to this, questionnaires will also be sent if the hospital is identified as providing care to a child or young adult identified for inclusion in the study via another organisation.
Primary care combined clinician and organisational questionnaire
The primary care combined clinician and organisational questionnaire will be sent for all children and young adults sampled for inclusion in the study where the GP can be identified.
Case note extracts for review
Case notes will be requested for all patients included in the peer review aspect of the study.
Organisational questionnaires
An organisational questionnaire will be sent to all providers of healthcare where children and young adults with JIA might be cared for.
Patient Participation
The initial Patient Participation Groups have now finished; however, we will be asking children and young adults with JIA to complete a survey of their experiences.
This will be made available on this page as soon as it is ready.
Please see the study protocol for more detailed information on the study methods.
Any other queries relating to this study should also be addressed to arthritis@ncepod.org.uk .
This page will be updated regularly so please check for further information.
