Improving transition experience for youth with special health care needs: The myvoice transition clinic

Background: Over the past 25 years, more young people with lifespan-limiting illness and disability have been surviving into adulthood, challenging providers to develop interventions that can help prepare these patients to transition from pediatric to adult healthcare. Children's Hospital Los Angeles (CHLA) has recently launched the MyVoice transition clinic to serve the needs of CHLA adolescent patients. Assessment of patient transition readiness and needs is critical for the development and refinement of transition intervention models. Methods: One hundred (100) patients, 15-21 years old, recruited from CHLA subspecialty clinics, completed a computer-assisted structured interview between December 2011 and January 2013. Survey domains included disease management, psychosocial functioning and risk behavior. Results: A sub-sample of recruited patients (16.0%) were also receiving care at the MyVoice transition clinic. Respondents participating in the clinic intervention were more likely to have discussed adult care with their providers, to feel that transition support has been sufficient and significantly less likely to have concerns about switching from their pediatric provider to adult care (p<0.05). They were not more likely to engage in more self-advocacy, be more effective at self-care or to feel ownership of their health care. Conclusions: Participation in a specialty transition program for youth with special health care needs appears to reduce anxiety about the process of transition. However, greater levels of coaching may be needed to enable youth to become truly effective at navigating the adult care system. Longitudinal research with transition clinic youth is ongoing to illuminate learning trajectories in transition aged youth.