Using Electronic-Medical Records to Facilitate Transition From Pediatric to Adult Hematology for Sickle Cell Disease
Venée N Tubman, Abdullah Kutlar, Albert C Hergenroeder, Alexis A Thompson, Constance M Wiemann, Oluwaseun Olaiya, Kenneth A Rivlin, Mary E Sehl, Modupe Idowu, Titilope Fasipe, Batha Tariq, Amanda Gregg, Bianca Bernal, Candice Deler, Duc T Nguyen, Diane Wilkins, Jemimah O Frempong, Kenneth Nobleza, Melanie M Aviles, Noe Gonzalez, Osarenkhoe Iyamu, Siera Gollan, Smirthy Ganesan, Raymona H LawrenceAbstract
Background
Transition of care from pediatric to adult hematology for adolescents and young adults (AYA) with sickle cell disease (SCD) is a complex process and occurs during a critical time in both disease progression and life. In SCD, the death rates for patients aged 20-24 is twice as high as for those aged 15-19, and use of acute care also rises. This period with increased morbidity and mortality that warrants careful attention. To define success in transition from pediatric to adult hematology care, we consider an ecological framework that includes: the individual (knowledge and confidence), family and caregivers, healthcare systems (care coordination and electronic records), community support for non-medical needs, and institutional and local/national policies. To address individual and family needs, we have launched a series of focus group discussions to engage community members in conversation about defining success in transition. Here, we report on our initial assessment of healthcare systems and the electronic medical record (EMR) in transition. Improving transition success by optimizing EMR tools requires better understanding the quantity and quality of data within the EMR. In this study, we describe the transfer rates and health care utilization of patients with SCD who have transitioned care from the perspective of pediatric and adult hematology programs based upon available registry and EMR data.
Methods
We conducted a pilot retrospective chart review of adolescents and young adults (AYA) with SCD aged 18-26 years who transferred from pediatric to adult hematology between 2017-2023. We collected data from three pediatric and three adult hematology programs. All participating sites were urban medical centers without an active lifespan program. The number of active patients in the participating programs ranged from 150 to 1300 patients. Pediatric providers reported on AYA who left their programs during the study period. Adult providers reported on AYA who entered their programs during the same period. We defined the transition period as the time between the last pediatric and first adult visit. We collected demographic data, assessed the use of EMR-based transition support tools, length of transition period, and health care utilization defined as, Emergency Department (ED) visits and hospitalizations during the transition period. Additional data were sourced from local registries when EMR data were unavailable.
Results
Review of the EMR highlighted challenges with tracking patients across systems. Many data elements, especially verification of appointment dates, were not readily available in the EMR. A total of 227 patients were included in this analysis, including 68 subjects from adult hematology and 159 from pediatric hematology programs. The median rate of ED usage during the period of transition was 3 visits per year (IQR: 0, 1) for AYA reported from pediatric programs and 0 visits per year (IQR: 0, 4) for AYA reported from adult programs. However, the duration of the transition period differed significantly when reported from pediatric EMR/registries compared to reports from adult EMR/registries. Based on the available data, the median duration of the transition period was 91 days when reported by an adult hematology program and 199 days when reported by a pediatric program (p < 0.01). There was a weak correlation between the rate of ED usage and the duration of transition (r2 = 0.01). The difference in the duration of the transition period suggests a limitation in the critical transfer of information between Hematology clinics.
Conclusions
This work is part of an ongoing effort to define and assess successful transition from pediatric to adult care. EMR tools may have a role in facilitating transition; however, a standardized tool has not yet been developed to ensure consistent information transfer across health care centers. Our retrospective review highlights the current reality of lost data and patients being lost-to-follow-up during the period of transition from pediatric to adult hematology care. The implementation of a formal communication system between referring pediatric and receiving adult hematologists who care for AYA with SCD, could greatly increase the success of transition by shortening the gap between transition of care. Additional efforts to develop the ecological framework for transition of care in SCD are ongoing.