Transfer and integration into a young adult clinic for sickle cell disease: Stay with me

Abstract Introduction: Near universal survival of children with sickle cell disease (SCD) into adulthood makes transition from pediatric to adult care a necessary step. Got Transition guidelines define core elements of healthcare transition but offer little on supporting young people after arrival in adult care. In 2025, the National Alliance of Sickle Cell Centers (NASCC) published consensus definitions of successful transfer and integration into adult SCD care. The purpose of this study was to apply these definitions to our previously described cohort of young adults with SCD at a single Center and identify factors associated with transfer and integration into adult care. Methods – This retrospective cohort study was approved by the Johns Hopkins Institutional Review Board. In May 2025, we collected young adult clinic visits for patients aged 18-24 years who transitioned to our adult Center. All patients attended an initial hematologist visit between March 2019 and May 2024. Patient demographics, disease characteristics, and Montreal Cognitive Assessment (MoCA) screening were collected by chart review. At their first visit, a subset of patients completed the American Society of Hematology's Sickle Cell Disease Transition Readiness Assessment, Transition Intervention Program - Readiness for Transition, and the Adult Sickle Cell Quality of Life Measurement (ASCQ-Me). A NASCC consensus statement defines successful transfer of care as attending two visits with a comprehensive sickle cell program in the first year in adult care. We operationalized this definition as routine visits with the hematologist or advanced practice providers in our Center. The NASCC definition of successful integration into care is completion of at least 50% of annual comprehensive visits in the first 5 years of adult care. We considered one hematologist appointment per calendar year an annual comprehensive visit. Applying these definitions to our cohort, we categorized patients to determine rates of successful transfer and integration. Subsequent analyses determined patient characteristics and survey results associated with these outcomes. Patient characteristics were compared using chi-square tests for independence. Differences in mean ages, scores on cognitive screening assessments, and surveys were compared using t-tests. Results: One hundred and forty-five patients met inclusion criteria, mean age of 22.7 (SD 1.4) years, 57% female, 97% Black, 74% HbSS/HbSβ0 genotypes, and 54% publicly insured. Following the initial young adult clinic hematologist visit, 83% attended a second Center visit within a year, meeting successful transfer of care standards. Failure to transfer was associated with lower cognitive screening scores (mean MoCA score 25.2 vs 23.2, p=0.01). Successful transfer was associated with completion of the ASCQ-Me (51% vs 28% completion, p=0.04). No other associations between characteristics or surveys were identified. Fifty-one patients had 5 years of data from their initial visit until May 2025. Thirty-four (67%) attended at least half of their annual hematologist visits over that period and met criteria for successful integration into adult care. Among the remaining patients, 5 (10%) left the Center, with all but one transferring SCD care elsewhere. Four (8%) remained in the Center, seeing advanced practice providers. Three (6%) moved out of state for work or family, 2 (4%) died, 2 (4%) had successful bone marrow transplant, and 1 (2%) was seen only in consultation. Better cognitive screening scores were also associated with successful integration (mean score 25.7 vs 23.8, p0.05). There were no patient characteristics or survey results associated with integration. Discussion: Most patients successfully transferred and integrated into a dedicated young adult clinic embedded in a comprehensive adult SCD Center. To our knowledge, this is the first application of NASCC consensus definitions of transfer and integration. Better cognitive screening scores were associated with successful transfer and integration. Participation in specific survey assessments was associated with successful transfer. Of the patients falling below the threshold for integration, nearly half moved or changed care centers, and only one patient became unaffiliated with SCD care entirely. Our findings highlight the challenge of collecting and interpreting appointment attendance data during the dynamic period of young adulthood.