Transition Navigator Intervention Improves Transition Readiness to Adult Care for Youth With Sickle Cell Disease
Section snippets
Methods
This proof-of-concept single group pre-post study was approved by the Institutional Review Board of Albert Einstein College of Medicine/Montefiore Medical Center. Funding for this pilot project was for a 2-year period. We enrolled 60 youth with SCD between May 2016 and July 2017. They completed questionnaires (described below) at baseline and 6 to 12 months later, after completion of the structured intervention.
Demographics and Disease Characteristics
In total, 62 AYAs met study criteria; 60 were recruited into the study and 2 refused participation. Of the 60 enrolled participants, 56 completed the intervention, 1 was incarcerated during intervention timeframe and 3 dropped out (Figure). The analysis was completed on the 56 who completed both study questionnaires. Demographics and disease characteristics are shown in Table 1. Of note, 85.9% reported that they were either in college, applying, or planning to go to college; 42.1% were
Discussion
This study demonstrates that the use of a protocolized TN intervention in a US urban academic center subspecialty practice is feasible, acceptable to participants, and effective in improving transition readiness, disease knowledge, and reducing patient and systems barriers to transition. Several lessons learned were identified by the TN and the team in implementing a transition intervention for AYAs with SCD.
Having a well-defined, structured intervention and a trained individual with designated
Limitations
This study was a single-group pre-post proof of concept study. The lack of a comparison group is a weakness although the magnitude of the improvements seen following the intervention provides significant support for conducting a larger randomized trial. Because only a small subset of the youth transferred to adult care during the pilot study period, the impact on this important metric as well as on retention in adult primary and specialty care will need to be assessed rigorously in future
Conclusions
Our findings demonstrate that participation in an intensive TN intervention targeting adolescents and young adults 17 to 20 years old with SCD over 6 to 12 months was associated with significant improvement in transition readiness, disease knowledge, and confidence in disease and pain management. The intervention was acceptable to youth and feasible to implement at an urban academic medical center. Further testing of the feasibility of adapting this TN intervention for telehealth or video
Acknowledgments
Financial statement: This work was supported by Montefiore Medical Center CMO (Care Management Organization), Bronx, NY. Sponsor had no role in study design, in the collection, analysis and interpretation of data; in the writing of the report; and in the decision to submit the article for publication.
Authorship statement: All authors have contributed to all of the following: 1) the conception and design of the study, or acquisition of data, or analysis and interpretation of data; 2) drafting
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The authors have no conflicts of interest to disclose.