Peer-reviewed article

P56 Involvement of young people in adolescent and young adult rheumatology services and research

· 28 Sept 2022

Abstract

Abstract Introduction/Background The Barbara Ansell National Network for Adolescent Rheumatology (BANNAR) was established in 2012. Survey results from within the paediatric and adolescent rheumatology community at this time, highlighted the lack of young people’s involvement in rheumatology research, beyond the role of study participant. Following research to determine the young person’s perspective of research and how they wanted to be involved, Your Rheum, a national young person’s advisory group, for 11-24 year olds diagnosed with a rheumatic condition, was formed in 2016. Description/Method Aim: to assess the current involvement of young people in rheumatology research and service delivery. A questionnaire was created using Microsoft Office online forms and emailed to all BANNAR members (n = 105). Topics included demographics, youth involvement panels and Your Rheum. Discussion/Results 23 responses were received (21% response rate), representing 18 rheumatology centres across the UK including 15 tertiary paediatric and adolescent rheumatology centres. The majority of respondents were Consultants (n = 18). Over half of respondents (n = 16) work in centres involved in rheumatology research. 15 centres reported having a hospital-wide youth forum/advisory panel, which they promote amongst young people within their services. However, nearly all respondents reported no specific youth advisory panel for rheumatology services. Young people are actively involved in a number of areas within clinical rheumatology services (table 1), however patient satisfaction surveys were the most commonly reported. Moreover, young people are involved in aspects of rheumatology research (table 1), although this was primarily as research participants.P56 Table 1:What aspects of your CLINICAL rheumatology service do young people actively participate in currently? CountPatient satisfaction surveys10Service design and development8Recruitment and interviewing of new clinical staff5Training of health professionals2Undergraduate education1Reviewing local service provision against criteria other than the You're welcome criteria1Other, (development of app)1What aspects of your rheumatology RESEARCH do young people actively participate in? CountResearch participants in relevant projects9Developing protocols5Membership of an advisory board5Design of interventions4Setting the research agenda3Recruitment and interviewing of new research staff who will have direct contact with young people3Dissemination of results3Co-researchers3 Over half of respondents (n = 14) have not worked with Your Rheum. Most recruit young people to get involved in the group (n = 16), however, only three respondents said they do this routinely. Common barriers to promoting Your Rheum were: lack of time in consultations; forgetting; lack of interest from the young person(s); no designated member in clinic to discuss Your Rheum with young people. Key learning points/Conclusion There remains a need to support youth involvement strategies at a local level as well as nationally via Your Rheum. The recent introduction of a Your Rheum animation (https://bit.ly/yourRHEUM) will hopefully support future recruitment.