YOUNG adult rheumatology transitional care benefits when patient priorities directly guide targeted service improvements and design.
Patient Priorities Shape Service Redesign
A mixed methods evaluation used group concept mapping to capture what matters most to patients aged 16 to 25 who attend an adolescent and young adult rheumatology clinic. Participants generated ideas about their experiences, then sorted and rated them, which enabled multidimensional scaling and hierarchical clustering to produce an interpretable concept map. The approach revealed strengths already present in the service and highlighted where focused change could make the greatest difference to everyday care.
Six Domains for Improvement
The concept map identified six themed clusters that together describe the agenda for improvement. Rheumatology Service Contact and Personal Information addressed clear points of contact and accurate records, which enable smoother navigation across settings. Employment and Education Support and Advice reflected the importance of guidance that protects study and work during treatment. Mental Health and Wellbeing Support underscored the value of routine assessment and rapid referral, given the psychological burden associated with chronic disease. Education and Advice About My Condition emphasized structured teaching on diagnosis, medicines, and self-management. General Clinic Improvements covered fundamentals such as appointment access and environment. Young Adult Specific Clinic Improvements focused on communication style, flexible scheduling, and a setting that feels appropriate for this life stage.
Translating Findings into Practice
For clinicians and service leads, these patient-defined priorities offer a practical roadmap for transitional care. Clear communication pathways, accessible personal information, and planned self-management education can strengthen handovers and build confidence as adolescents enter adult care. Integrating mental health screening within routine visits aligns support with need. Offering employment and education advice helps patients maintain momentum in school and work, which supports adherence and quality of life. Tailoring clinic features to young adults, including flexible timing and age-appropriate communication, can enhance engagement and reduce missed appointments.
Co-Design to Sustain Progress
Because patients rated how well each idea is currently met, the concept map provides both a baseline and a shared language for co-design. Teams can partner with young people to select the most valuable targets, implement changes, and then reassess against patient reported priorities. This continuous cycle links service improvement to real world needs and supports consistent, person-centered transitional care.
Reference: Hughes A et al. Identifying patient priority targets for improving a transitional care young adult rheumatology service: a group concept mapping evaluation. Rheumatology Advances in Practice. 2025;9(4):rkaf118.
