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Improving Health Care Transition for Young Patients With Sickle Cell Disease Through Quality Network

quality improvementsickle cell disease

JAMA Network Open

Volume, Issue, Pages: 8(4):e254957
DOI: doi:10.1001/jamanetworkopen.2025.4957
Date published: April 2025
Authors: Ofelia A. Alvarez, MD; Carrie Gann, APRN; Debbie Ringdahl, APRN; Manisha Bansal, MD; Farranaz Alvarez Nunez, MD; William Slayton, MD; Reema Kashif, MD; Tung Wynn, MD; Elizabeth Bradley, RN; Kathryn Diener, RN; Katrina Rivers, RN; Sherry Buchman, RN; Angela Chatfield, RN; Monica Heldreth, RN; Sandra Widland, MPH; Liz Y. Bayes, MD; Sue Butts-Dion, BS, AS
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Abstract

Importance  Transitioning from pediatric to adult health care is crucial for the continuity of care for young adults with sickle cell disease. Among 5 pediatric hematology practices participating in the Florida Pediatric Hematology Learning and Action Network, 3 practices lacked transition programs before this quality improvement project.

Objective  To evaluate the implementation of programs to improve care for individuals transitioning from pediatric to adult care for sickle cell disease.

Design, Setting, and Participants  This multicenter observational quality improvement study was conducted at 5 pediatric hematology centers in Florida. All patients with sickle cell disease ages 14 to 21 years without neurocognitive impairment who attended 1 of the 5 centers over the project period were included. Data were analyzed from June 2022 to December 2023.

Exposure  The network participated in virtual learning about quality improvement and the Got Transition health care transition framework. Clinics organized transition programs and used the Model for Improvement and plan-do-study-act cycles. Readiness assessments and transition plans were implemented. Data updates were conducted every month. P-charts were created to present aggregate and individual practice improvement.

Main Outcomes and Measures  Percentage of patients with sickle cell disease ages 14 to 21 years attending a clinic at each center with a readiness assessment and a transition plan at least once during the previous 12 months as verified by monthly electronic health record (EHR) audits.

Results  Among 627 patients who met criteria for transition implementation because of age and diagnosis, 458 patients were assessed (240 male [52.4%] and 218 female [47.6%]). Collective change initiatives included educating the clinical staff about the health care transition framework, establishing processes for identifying eligible patients using the patient roster, and creating reliable processes and procedures to ensure that patients had a readiness assessment and transition plan. Over the 19-month project, monthly EHR reviews of 100% or a sample of 10 random EHRs demonstrated an increase in the aggregate mean percentage of eligible patients with readiness assessment from 68.8% (95% CI, 63.1%-74.5%) to 87.8% (95% CI, 85.6%-89.5%), representing a 27.6% improvement. The aggregate transition plan increased from 58.8% (95% CI, 53.3%-64.2%) to 81.2% (95% CI, 78.9%-83.5%), with sustained metrics for over 12-month-period.

Conclusions and Relevance  These findings suggest that collaboration among centers was associated with successful achievement of goals. Educating and sharing responsibilities among all center clinicians, identifying patients ahead of time through EHR reviews and clinic-staff huddles, and having electronic versions of readiness assessment and dot phrases to document plans were associated with sustained outcomes.