A young adult clinic to support integration into adult sickle cell disease care: If you build it, they will come.

Abstract

In high-income countries, individuals with sickle cell disease (SCD) almost universally survive into adulthood, but transfer to adult SCD care is fraught. The young adult clinic (YAC) at our sickle cell centre was designed to provide developmentally appropriate, expert SCD care to young adults with SCD aged 18-30 years. In this retrospective cohort study, we measured YAC appointment attendance and scheduling attempts based on patient referral source and demographic characteristics. Between 1 March 2019 and 30 September 2023, 89% (170/192) of referred patients attended a YAC appointment, and 97% (77/79) of patients referred from paediatric SCD care attended a YAC appointment. Most patients attended their first scheduled appointment (61%, 105/170). Among rescheduled patients, the mean number of scheduling attempts before attendance was 2.9 (standard deviation 1.5). During the 55-month study period, this cohort had five deaths (3%) and seven successful haematopoietic stem cell transplants (4%). These results indicate that healthcare systems designed to meet the needs of young adults with SCD enable successful participation in adult SCD care. Resources to build robust adult SCD care systems are desperately needed, alongside research regarding optimal approaches to integrating young people into adult SCD care.