Elsevier

Academic Pediatrics

Volume 22, Issue 3, April 2022, Pages 422-430
Academic Pediatrics

Transition Navigator Intervention Improves Transition Readiness to Adult Care for Youth With Sickle Cell Disease

https://doi.org/10.1016/j.acap.2021.08.005Get rights and content

Abstract

Objective

Adolescents and young adults (AYA) with sickle cell disease (SCD) experience high rates of acute care utilization and increased morbidity. At this high-risk time, they also face the need to transition from pediatric to adult services, which, if poorly coordinated, adds to heightened morbidity and acute care utilization. The study objective was to characterize the feasibility, acceptability, and short-term efficacy of a protocolized transition navigator (TN) intervention in AYA with SCD.

Methods

We developed a protocolized TN intervention that used ecological assessment and motivational interviewing to assess transition readiness, identify goals, and remove barriers to transition, and to provide disease and pain management education and skills to AYAs with SCD.

Results

Ninety-three percent (56/60) of enrolled individuals completed the intervention. Participation in the TN program was associated with significant improvement in mean transition readiness scores (3.58–4.15, P < .0001), disease knowledge scale (8.91–10.13, P < .0001), Adolescent Medication Barriers Scale (40.05–35.39, P = .003) and confidence in both disease (22.5–23.96, P = .048) and pain management (25.07–26.61, P = .003) for youth with SCD.

Conclusion

The TN intervention was acceptable to youth with SCD, feasible to implement at an urban academic medical center, and addressed barriers to transition identified by the youth. Longer-term assessment is needed to determine if the TN intervention improved successful transfer to and retention in adult care.

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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    • Transfer of care for people with severe forms of thalassemia: Learning from past experiences to create a transition plan

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      Citation Excerpt :

      Findings suggest that determining the timing of a healthcare transfer is a very complex question and cannot necessarily be based on chronological age alone for a person with a chronic condition (Straus & Brown, 2019). Manwani et al. (2021) described a recent transition intervention program for people with SCD focused on young adults between ages 17–20 years and found that its implementation by nurses, social workers, or other patient educators such as genetic counselors resulted in a feasible healthcare transition readiness program that patients considered acceptable as a method for improving knowledge and confidence in understanding their disease. Lapp and Chase (2018) found that among youth with cystic fibrosis, beginning the transition process by age 16 years was too late, and that the discussions that initiate the healthcare transition process may not even be recognized as such by the young adults involved.

    The authors have no conflicts of interest to disclose.

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