Growing Pains – Determination of Transfer and Transition from Pediatrics to Adult Outpatient Clinics for Patients with Sickle Cell Disease (SCD)

Introduction. Advances in medicine in the last four decades have allowed adolescents with Sickle Cell Disease (SCD) to survive into adulthood. Consequently, there is a sizeable number of maturing young adults with SCD who require transition from pediatric to adult care. This transition can be difficult given the tumultuousness of outgrowing adolescence and entering adulthood, the burden of living with a chronic disease, and the self-advocacy and medical independence expected from patients by adult health care providers. To better understand utilization of care during this period in a comprehensive SCD center, we investigated the number of patients who transferred and successfully transitioned from pediatric outpatient hematology care to adult care.

Methods. Following IRB approval, a retrospective chart review of patients with SCD aged 18-23 years in the Duke University Medical Center electronic medical record database was conducted. Included for each patient was a list of all clinic encounters at Duke through the December 2013. A total of 342 SCD patient records were retrieved, of which 88 (26%) were excluded because of missing data on outpatient SCD encounters. Transfer was defined as a clinic visit in pediatrics followed by a subsequent visit in the adult clinic. Successful transition was defined as at least 1 year of follow up care in adult hematology clinic post-transfer.

Results. The 284 patient records fell into three utilization patterns: 182 whose last encounter was a pediatric visit (72%), 20 who started care in the adult clinic (8%), and 52 who transferred from pediatric to adult care (20%). Within the pediatric group, 36 patients were actively receiving care while 146 were lost to follow-up. Among patients that transferred, the average age of transfer was 18.6 years and the transfer occurred within 3 months of the last pediatric visit for 61% of patients. Although 71% of transferred patients continued care for at least 1 year post-transfer, the majority of 19-20 year old patients (61%) did not transition successfully.

Discussion. Our findings show that SCD patients aged 18-23 are having difficulty transferring and successfully transitioning from pediatric to adult hematology care in the Duke Medical Center despite having a single medicine-pediatric provider. The majority of patients had their last visit in pediatric care which is consistent with Duke’s SCD clinical practice to keep 18-20 year old patients in pediatric care to better educate patients. The large number of patients who stopped care in pediatrics may be explained by care provided by non-Duke hematologists or primary care providers; relocation; or use of acute care clinics (emergency department, urgent care, and day hospital) as a substitution for regular care. As observed in this data, when transfer does occur among this younger adult group of 18-20 year olds, only a third of the patients have a successful transition. The low success rate may be accounted for by patient impression of health; avoidance of regular care; loss of insurance; and struggle with independence.

Implications. The results underscore the need to not only improve successful transition rates for SCD patients but also to assist and track patients preparing to transfer to adult specialty clinics. Further research is needed to determine what is happening to patients who are lost to follow-up during their pediatric care and to determine the relationship between the amount of time to transfer and successful transition rates. Because our robust definition of a successful transition is more sensitive to identifying gaps in continuous care as compared to other success metrics based on a 50% show rate, we were able to identify 19-20 years as a critical age group for intervention.