Barriers to continuity of care and adult practice retention among adolescents and young adults with sickle cell disease

Abstract Introduction For adolescents and young adults (AYA) with sickle cell disease (SCD), successful pediatric to adult care transition is crucial for continuity of care. Among AYA who took longer than six months to establish adult care, there was a higher rate of hospitalization and morbidity. Moreover there is a steep decline in adult practice retention after 12months of first adult visit. The Memphis Trans-Institutional Transition to Adult Care program, a collaboration between St. Jude and Methodist Hospitals, begins at age 13 years and continues until age 25 years, and supports individuals with SCD who transitioned from pediatric to adult care. In January 2022, we started a quality improvement (QI) project with a global aim of improving our pediatric to adult transferal rate and ultimately adult practice retention. 85%. Methods To establish a baseline, we reviewed the pediatric to adult transfer and retention rates of SCD youth (ages 18-20) between January 2017 to August 2021. We defined the appropriate time to establish care as within 6 months of leaving the pediatric practice and retention was defined as being engaged with an adult provider within the first year after transition from pediatric care. We also implemented a clinic wide patient survey of 13 questions aimed at understanding barriers to engagement. Institutional IRB approved this study with a waiver of consent from participants. Results 174 individuals >18yo, 75(43%) females and 99 (57%) males, transitioned from St Jude to Methodist since 2017. Of those, 88% established adult care within 6 months from completion of pediatric care, with 73% remaining in adult care at 1 year and 55% at 2 years after initiating adult care. 81 individuals completed our patient survey aimed at understanding the barriers to clinic retention. 96% of patients felt it was important to make their appointment. The most cited reason for making it difficult to come to appointments included transportation (36%) with 24% of this citing dependency on parents or friends for transportation. Other commonly cited reasons included: health concerns such as being in pain or being sick/admitted to the hospital (22%); conflicts with school/work (10%) and forgetting about the appointment (16%). While most (68%) stated that the insurance provided transportation was easy to use, 32% did share this as a barrier to clinic follow up. Unfortunately, not many respondents disclosed reasons why the insurance provided transportation was a barrier; only 4 individuals responded and reported that their mobile application did not work or that the transportation itself took too long or did not show up at all. Surprisingly, most patients (80%) did not prefer telehealth as an option and would rather an in-person appointment. Conclusion While our pediatric to adult transferal rate is high, there is a steep decline in clinic retention at 24months after the initial transfer. Barriers to consistent follow-up include transportation with most patients depending on friends or family members. A potential option for these patients may be insurance provided transportation, however, reasons for not using this option should be explored further. Interestingly, many patients in the AYA age group did not prefer telehealth as an option. This is consistent with published by the Department of Health and Human Services in the 2021-2022 National Survey Trends in Telehealth Utilization showing low rates of telehealth use among AYA individuals. The reason behind this remains underexplored. One may hypothesize that AYA prefers a more interpersonal approach to their care, favoring the conventional patient-physician-medical team approach. Despite this, however, telehealth remains an important tool for a SCD provider who aims to provide care to patients who may not have reliable transportation, other conflicts or even those who may live in rural areas. We believe that this observation should be explored further to ultimately improve the overall continuity of care.