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. 2022 Oct 21;20(1):93.
doi: 10.1186/s12969-022-00751-1.

Longitudinal assessment of preparation for care transition among adolescents and young adults with rheumatologic disease: a single-center pilot study

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Longitudinal assessment of preparation for care transition among adolescents and young adults with rheumatologic disease: a single-center pilot study

Jordan E Roberts et al. Pediatr Rheumatol Online J. .

Abstract

Adolescents and young adults (AYA) with rheumatologic diseases are at high risk for poor outcomes and gaps in care when transitioning from pediatric to adult care. However, tools for evaluating transition readiness and assessing the impact of transition interventions are limited. We implemented a written transition policy at our pediatric rheumatology center and evaluated preparation for transition among AYA 16 and older before and after distribution. 31 of 77 patients completed the follow-up survey (response rate 40%). Patient report of transition counseling increased following written transition policy implementation, though these results were not statistically significant in our small cohort. Most follow-up respondents (n = 19, 61%) had not yet completed care transfer; 4 (13%) had arranged a visit with an adult rheumatologist and 8 (26%) had fully transitioned to adult care. Those who successfully completed care transfer were older, had completed higher levels of education, and had significantly higher baseline transition preparation scores compared to those with no transfer arranged or planned visit only. Our single-center pilot study demonstrated that longitudinal assessment of transition preparation is feasible and that scores are significantly associated with care transfer outcomes. Tracking transition preparation over time may provide practices with information on areas of highest need for transition guidance and predict successful transfer among AYA with rheumatologic disease.

Keywords: Adolescent; Patient-reported outcomes; Survey; Transfer of care; Transition.

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Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Flow Diagram of Survey Participants

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References

    1. Cooley WC, Sagerman PJ. Supporting the health care transition from adolescence to adulthood in the medical home. American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians; Transitions Clinical Report Authoring Group. Pediatrics 2011 Jul;128(1):182–200. doi:10.1542/peds.2011-0969. - PubMed
    1. McManus MA, Pollack LR, Cooley WC, McAllister JW, Lotstein D, Strickland B, Mann MY. Current status of transition preparation among youth with special needs in the United States. Pediatrics. 2013;131;6:1090–7. doi: 10.1542/peds.2012-3050. - DOI - PubMed
    1. Hersh A, von Scheven E, Yelin E. Adult outcomes of childhood-onset rheumatic diseases. Nat Rev Rheumatol. 2011;7(5):290–5. doi: 10.1038/nrrheum.2011.38. - DOI - PMC - PubMed
    1. Son MB, Sergeyenko Y, Guan H, Costenbader KH. Disease activity and transition outcomes in a childhood-onset systemic lupus erythematosus cohort. Lupus. 2016 Nov;25;13:1431–1439. doi: 10.1177/0961203316640913. - PMC - PubMed
    1. Bitencourt N, Makris UE, Solow EB, Wright T, Reisch EJ, Bermas BL. Predictors of Adverse outcomes in patients with systemic lupus erythematosus transitioning to adult care. Semin Arthritis Rheum. 2021;51(2):353–9. doi: 10.1016/j.semarthrit.2021.02.001. - DOI - PubMed