Transition Navigator Intervention improves transition readiness to adult
care and addresses barriers for youth with Sickle Cell Disease
Abstract
Background Adolescents and young adults (AYA) with Sickle Cell Disease
(SCD) experience especially high rates of acute care utilization and
increased morbidity, due in part to disease exacerbation and in part to
the developmental challenges of adolescence. It is at this very
high-risk time that they also face the need to transition their care to
adult services, further adding to the heightened morbidity and acute
care utilization, if poorly coordinated. Previous research supports the
effectiveness of patient navigators to assist those with complex health
conditions and healthcare needs, and has also identified the utility of
a transition navigator for youth with special health care needs. Methods
We developed a protocolized transition navigator intervention that used
ecological assessment and motivational interviewing to assess transition
readiness, identify goals, and remove barriers to transition, as well as
to provide disease and pain management education and skills to AYAs with
SCD. We assessed feasibility, acceptability and short-term efficacy in
n=60 youth aged 17-20 with SCD. Findings Participation in the TN program
was associated with significant improvement in transition readiness,
disease knowledge, and confidence in disease and pain management for
youth with SCD Conclusion The TN intervention was acceptable to youth
with SCD and feasible to implement at an urban academic medical center
and addressed most of the barriers to transition identified by the
youth. Longer-term assessment is needed to determine if the transition
navigator intervention improved successful transfer to and retention in
adult care and reduced morbidity and ED reliance over time.