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Transition Navigator Intervention improves transition readiness to adult care and addresses barriers for youth with Sickle Cell Disease
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  • Deepa Manwani,
  • Maya Doyle,
  • Lynn Davidson,
  • Makeda Mallea,
  • Ellen Silver,
  • Jenai Jackson,
  • Karen Ireland,
  • Rosy Chhabra,
  • Kerry Morrone,
  • Caterina Minniti,
  • Deepa Rastogi,
  • Ruth Stein,
  • Suzette Oyeku,
  • Laurie Bauman
Deepa Manwani
Children's Hospital at Montefiore
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Maya Doyle
Quinnipiac University
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Lynn Davidson
Albert Einstein college of Medicine
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Makeda Mallea
Children's Hospital at Montefiore
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Ellen Silver
Yeshiva University Albert Einstein College of Medicine
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Jenai Jackson
Yeshiva University Albert Einstein College of Medicine
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Karen Ireland
Children\'s Hospital at Montefiore
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Rosy Chhabra
Albert Einstein College of Medicine
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Kerry Morrone
The Children's Hospital at Montefiore
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Caterina Minniti
Yeshiva University Albert Einstein College of Medicine
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Deepa Rastogi
Children's National Hopsital
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Ruth Stein
Albert Einstein College of Medicine
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Suzette Oyeku
The Children's Hospital at Montefiore
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Laurie Bauman
Albert Einstein College of Medicine
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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.