Outcomes of a Multi-Disciplinary Young Adult Sickle Cell Clinic

Background: Advancements in science, alongside new therapies, and interventions, have improved survival for patients living with sickle cell disease (SCD). However, as survivorship in childhood improves, adolescents and young adults are particularly vulnerable, with a spike in mortality rates and more frequent complications.The transition from pediatric to adult care among this population is therefore crucial. Formal adolescent and young adult focused transition clinics have shown potential in facilitating optimal transition for children with chronic illnesses including SCD. We conducted a retrospective study to report the structure and analyze the outcomes of the multi-disciplinary Sickle Cell Transitional Program at the Tulane Sickle Cell Center of Southern Louisiana.

Methods: We retrospectively reviewed the charts of all patients with SCD treated at the transition clinic between 2021-2023 and between the ages of 18-25 during this period. A total of 36 patients within this age range were registered in the clinic at this time, however 5 patients were not included in the analysis, as they were lost to follow up and did not complete any transition visits. Socio-demographic data was collected as well as information on adult care transfer completion <6 months from completing pediatric care, number of transition visits prior to establishing adult care, and average number of adult visits per year. Bivariate analyses including Chi-square and simple logistic regression were conducted to identify potential factors associated with adult care transfer completion. All data analyses were performed in R analytics.

Results: The clinic is made up of a multidisciplinary team of pediatric and adult hematologists, nurse practitioners, nurse navigators, and social workers. The mean age of patients in the clinic was 21.48 (± 2.62). Most of the patients self-identified as African American (87.10%), were male (61.29%) and had HbSS genotype (70.97%). Of the 31 patients surveyed 9 (29.03%) successfully transitioned to adult care (had a visit with an adult provider within 6 months), and 1 patient (3.23%) had late transfer of care (14 months after transition completed). The mean number of transition clinic visits and number of adult care visits per year once established was 4.36 (± 2.76) and 2.2 (± 0.97), respectively. One patient (3.23%) abandoned adult care. Age (OR = 2.62) and number of transition visits (OR=1.42) were significantly associated with successful adult care transfer completion.

Study Limitations: Although the clinic had been in existence for several years, hospital mergers, changes in clinic locations and changes in EMR led to discontinuity in medical records, hence making it challenging to access more historical records, and possibly impacting patient retention.

Conclusion: Our evaluation suggests that transition to adult care is a long-term process which requires intensive longitudinal care and support. Individuals living with SCD would need several transition focused, young adult visits, with a multidisciplinary team to ensure successful transfer completion.

No relevant conflicts of interest to declare.