Impact of a Dedicated Young Adult Service on Risk of Non-Adherence and Non-Engagement in Pediatric-Adult Transition Transplant Recipients and in Young Adult Patients Presenting directly to Adult Care for Transplantation

Background and Aim During transition from pediatric to adult care there is a high risk of non-adherence with immunosuppression and clinical follow-up amongst teenage transplant recipients. This results in a markedly increased risk of transplant failure (35% within 3 years of transfer to adult care) and even mortality in liver and heart transplant recipients. There has been increasing recognition of the need for integrated pediatric to adult clinical pathways to facilitate the transition process with the potential to improve outcomes in transplanted teenagers and young adults. However little has been documented about outcome in older teenagers and young adults (aged 16-30) presenting directly to adult care. We have developed a dedicated teenage and young adult service for kidney transplant recipients co-ordinated by a youth worker. This study shows the impact of this novel approach on both transitioning and young adult transplant patients' risk of non-adherence and transplant failure. Method We established a dedicated young adult service involving a physician, nurse practitioner and a full time youth worker in 2015. The service comprises an integrated pediatric-adult transition pathway and a community-based young adult clinic (YAC) for 16-30 year old transplant recipients. The youth worker catalyses peer interaction, provides 1:1 support and community outreach to enhance engagement [Young Adult Service (YAS).Twenty five [ 10 transition (3m;7f median age 16 (15-17) yrs) ;15 newly transplanted young adult (2f;13m: median age 25(19-30)yrs] transplant patients participated in the YAC and YAS over a 2 year period between November 2015-2017. Each new patient entering the service was assessed for risk of non-adherence and disengagement and categorised into Levels 1(highest)-4(lowest) support from the YAS. Level 1 (Highest: immediate 1:1 support; currently non-adherent at risk of graft loss): Level 2 (Non-critical personalied regular support from youth worker); Level 3 (Low risk: in contact with young adult service (YAS); participating in peer support); Level 4 (Very low risk: seen by dedicated YAS team in standard clinics- no specialist youth worker support). Patients stable in Level 4 graduate into standard adult transplant clinics. The risk categoristaion was re-assessed in November 2017.Conclusion Risk of non-adherence and non-engagement is higher in new young adult patients presenting directly to adult care for transplantation than in pediatric transplant recipients transitioning to adult care. This is contrary to the published perception that transition to adult care carries the highest risk of non-adherence and poor clinical engagement. A dedicated young adult service with specific support from a youth worker can successfully enhance engagement and reduce risk of non-adherence in young adults coping with a transplant.