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Initial Outcomes in a Sickle Cell Disease Transition Clinic

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Date 2024 Dec 23
PMID 39712622
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Abstract

Background: Transition in sickle cell disease (SCD) is associated with an alarming increase in acute care utilization, cost, and risk of early mortality. Effective transition preparation is crucial to address these issues. We established a multidisciplinary transition clinic at our urban SCD center in the fall of 2021. At each visit patients were introduced to the transition process and met with a pediatric and adult SCD provider.

Methods: We reviewed charts of patients attending the clinic from September 2021 to May 2023. Data were collected on the number of visits in the transition and adult SCD clinics. Clinic notes were reviewed, identifying the main topics of discussion, and examining patient attitudes and feelings towards transition.

Results: Twenty-two patients aged 20-27 years with 35 total visits were included in the analysis. Eighteen (82%) patients had at least 1 visit to transition clinic. Out of 10 scheduled patients, 8 attended their first adult care visit within 2.4 months of their last transition visit. Medical topics brought up by patients included difficulty remembering to take hydroxyurea, questions about reproductive and menstrual health, and support pursing higher education with a chronic disease. Patients expressed a variety of feelings about transition from "no concerns" to "nervousness" and questioning "what to expect". Concerns were alleviated by learning about the process. One patient reported feeling "much better" after being introduced to the adult provider.

Conclusion: We demonstrated that a collaborative transition clinic prepares young adults with SCD for transition to adult care. Meeting with their adult SCD provider prior to transfer helped alleviate patients' concerns. Future work will involve tracking patients as they integrate into adult clinic.

References
1.
Howell K, Saulsberry-Abate A, Mathias J, Porter J, Hodges J, Ataga K . Transition care continuity promotes long-term retention in adult care among young adults with sickle cell disease. Pediatr Blood Cancer. 2021; 68(10):e29209. PMC: 9084595. DOI: 10.1002/pbc.29209. View

2.
. Global, regional, and national prevalence and mortality burden of sickle cell disease, 2000-2021: a systematic analysis from the Global Burden of Disease Study 2021. Lancet Haematol. 2023; 10(8):e585-e599. PMC: 10390339. DOI: 10.1016/S2352-3026(23)00118-7. View

3.
Lanzkron S, Sawicki G, Hassell K, Konstan M, Liem R, McColley S . Transition to adulthood and adult health care for patients with sickle cell disease or cystic fibrosis: Current practices and research priorities. J Clin Transl Sci. 2019; 2(5):334-342. PMC: 6390387. DOI: 10.1017/cts.2018.338. View

4.
Hamideh D, Alvarez O . Sickle cell disease related mortality in the United States (1999-2009). Pediatr Blood Cancer. 2013; 60(9):1482-6. DOI: 10.1002/pbc.24557. View

5.
Quinn C, Rogers Z, McCavit T, Buchanan G . Improved survival of children and adolescents with sickle cell disease. Blood. 2010; 115(17):3447-52. PMC: 2867259. DOI: 10.1182/blood-2009-07-233700. View