Involving young people in research investigating comorbidity associated with childhood-onset rheumatic disease: perspectives of a series of focus groups.

Abstract

Background: Childhood-onset rheumatic diseases, such as juvenile idiopathic arthritis, juvenile-onset lupus and juvenile dermatomyositis, appear to be associated with an increased risk of comorbidities in adulthood compared to the general population. For the first stage of a research project evaluating this topic, we wanted to capture views from young people with juvenile-onset rheumatic disease to ensure that further work was relevant to their lived experience and priorities. This study aimed to determine (i) which comorbidities young people identify as important, (ii) how they access information about their disease, including comorbidity risk, whether (iii) they would like to hear about the risk of comorbidities whilst they are under paediatric care, and (iv) would be motivated to make lifestyle choices to decrease the risk of potential comorbidities.

Methods: A topic guide based on the proposed study aims was developed, and PowerPoint slides were prepared to facilitate three focus group discussions to gain insights from young people. Focus groups were conducted via video platform, and the views of young people were assimilated using notetaking and an online interactive polling tool.

Results: A total of 18 young people between 10 and 27 years of age participated in the focus groups. Mental health (including depression and anxiety) was described as important comorbidity by 17/18 (94%), followed by obesity or being overweight by 9/18 (50%), heart disease by 7/18 (39%) and stroke by 5/18 (28%) of participants. Young people reported searching United Kingdom National Health Service websites, charity resources, and Google for information on their disease and associated comorbidities. They stated that they would be willing to change their lifestyle to reduce the risk of comorbidities if information were given to them sensitively with clear practical steps for reducing risk.

Conclusion: Three groups of young people identified risk of mental health issues, obesity, and cardiovascular morbidities as particularly important to them. They reported searching online platforms related to their disease and increasingly accessed online resources as they transitioned from paediatric to adult care. Participants thought it would be helpful to provide information on young people's disease and associated comorbidity in a motivational and sensitive way.

Clinical trial number: Not applicable.