P100 Working together to improve patient and family experiences of care for children and young people with juvenile idiopathic arthritis attending Newcastle Hospitals

Juvenile idiopathic arthritis (JIA) is the most common chronic rheumatic disease in childhood with significant potential for life-long morbidity. Despite advances in medical treatment options, a persistent discrepancy between clinical research and clinical practice data suggests that quality of care in JIA has room for improvement.

As part of the JIA Learn collaborative, the Newcastle Paediatric Rheumatology (PRh) team identified improving the patient experience of care in Newcastle Hospitals Children’s Outpatients (COPD) as a quality improvement (QI) priority.

The aim of this QI project was to identify and implement changes to the environment, systems and processes of COPD, assessing whether changes were associated with improved experiences of care. We used the Plan Do Study Act (PDSA) approach advocated by the Institute for Health Improvement Model for Improvement.

With the support of the JIA Learn coaching team (Rubis.QI), we developed an iterative approach to improvement, collecting quantitative and qualitative experience data. Subsequent tests of change were designed to explore whether each change was considered an improvement.

Three initial patient questionnaires focussed on distinct aspects of clinical care: care around presentation (n = 14), sharing information (n = 20) and MDT support (n = 9).

Most families reported satisfaction with their care and many comments were complimentary. We identified three key areas for improvement: (1) clinic environment; (2) accessibility of locally relevant online JIA information; (3) access to patient organisation support.

Subsequent patient and family interviews (n = 10) identified further detail in relation to the clinic environment with families reporting concerns about unfamiliar faces in clinic, waiting times for phlebotomy, and lack of adolescent-friendly areas or peer support opportunities.

The first phase of improvements included names and photographs on clinic doors, development of a PRh page on the regional Healthier Together website and implementation of a new buzzer system for anxious children awaiting phlebotomy. Subsequent family feedback was positive.

We developed a youth-led ‘Adulting Day’ with the Versus Arthritis Young People and Families Northern Ireland Youth Volunteers (VAYV - Caitriona Roberts, Zahra Baz, Shay Horan, Mark McKinnie), focussing on growing up and living well with arthritis. 25 young people attended, and we were delighted with their enthusiasm and engagement. Feedback focussed on the value of information from peers as well as the benefit of meeting others their age with similar health experiences. The second adulting day is planned in November 2024.

We are grateful for the opportunity to learn about QI and co-production from JIA Learn and the VAYV. We enjoyed learning together and working in collaboration with young people to improve the quality of our service.

The next phase of the project is to design new approaches to delivering developmentally appropriate care in environments that work for the adolescent age group.

L. Craig: None. S. Cairns: None. K. Hartley: None. R. Holyome: None. R. Guyll: None. J. Bennett: None. H. Alawad: None. C. Wright: None. E. Sen: None. F. McErlane: None.