Abstract
Background: In the US, adolescents and young adults with sickle cell disease (SCD) are vulnerable to increased mortality due to complications that arise in the transition period between adult and pediatric healthcare settings. In response to these observations, formal transition interventions, including transition clinics, have been developed to support adolescents and young adults through this period of transition. We conducted a retrospective study to compare the outcomes of a multi-disciplinary Sickle Cell Transitional Program with regular care at the Tulane University Sickle Cell Center of Southern Louisiana.
Methods: We reviewed the charts of all patients between the ages of 18 and 25 years with SCD treated at the clinic between January 2021- November 2024. A total of 49 patients were included in the analysis. Socio-demographic data was collected as well as information on 1) if transition was successful, defined as adult care transfer <6 months after last pediatric visit, 2) number of transition visits prior to establishing adult care 3) prevalence of mental health comorbidities, 4) total number of outpatient visits, and 5) acute care utilization. Bivariate analyses, including Chi-square, Fischer's exact and multiple regression, were conducted to identify potential factors associated with adult care transfer completion and acute care utilization. Simple linear regression was used to identify factors associated with acute care utilization. Unpaired t-test was used to test for differences in acute care utilization among individuals who participated in the transition clinic and those who did not. Data analyses were performed in R and GraphPad Prism.
Results: Currently the clinic provides care to individuals from 21 cities and 11 parishes across Louisiana. A total of 49 patients - 39 in the transition clinic group and 10 in the non-transition clinic group (i.e. transferred from pediatric to adult care without engaging in the transition clinic) were surveyed. The mean age of patients in the clinic was 21.38 (± 2.59) among the transition clinic group and 21.6 (± 2.59) among the non-transition clinic group. Most of the patients self-identified as Black (92.3% in transition clinic and 100% of non-transition clinic group) and had HbSS genotype (64.1% of the transition clinic group and 70% of non-transition clinic group). 41% of the transition clinic group and 11% of the non-transition group had co-morbid mental health conditions. 76.5% of those with mental health co-morbidities in the transition clinic group were established with mental health providers through the clinic compared with 0% in the non-transition clinic group. Of the 39 patients in the transition clinic group, 9 (23.07%) had successfully transferred to adult care (had a visit with an adult provider within 6 months), and 3 patients (7.7%) had late transfer of care (median of 14 months after last visit in transition clinic) at the time of analysis. The mean number of transition clinic visits prior to transferring to adult care was 5.73 (±2.53). Bivariate analysis using revealed that age ≥ 21, completing high school and attending 5 or more transition focused visits were significantly associated with successful adult care transfer completion (p < 0.0001, p = 0.017, p = 0.0407). There was no statistically significant difference in acute care utilization, medication compliance, or presence of SCD complications among both groups in our cohort. Individuals with an established mental health diagnosis had significantly higher odds of hospital admissions regardless of transition group. (OR = 4.65, p= 0.02).
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 and fragmentation of care, hence making it challenging to access more historical records, and possibly impacting patient retention.
Conclusion: Our analysis suggests that older age, higher levels of education and several transition focused visits significantly impact successful transfer from pediatric to adult care among patients with SCD. It also highlights the central role mental health comorbidities play in sickle cell disease and its impact on health care utilization. Our analysis highlighted the positive impact of adolescent and young adult focused transition clinics in establishing access to mental health care in this population.
