Osunkwo I, Cornette JS, Noonan L, Courtlandt C, Mabus S, White PH, McManus M, Robinson MM, Wallander ML, Eckman JR, Saah E, Alvarez OA, Goodwin M, Jerome Clay L, Desai P, and Lawrence RH
Background: Individuals with sickle cell disease (SCD) experience poor clinical outcomes while transitioning from paediatric to adult care. Standards for SCD transition are needed. We established a Quality Improvement (QI) Collaborative that aimed to improve the quality of care for all young adults with SCD by establishing a standardised SCD transition process. This study evaluates the implementation of the Six Core Elements (6CE) of Health Care Transition, which was a fundamental component of the cluster-randomised Sickle Cell Trevor Thompson Transition Project (ST3P-UP) study., Methods: A central QI team trained 14 ST3P-UP study sites on QI methodologies, 6CE and Got Transition's process measurement tool (PMT). Site-level QI teams included a transition coordinator, clinic physicians/staff, patients/parents with SCD and community representatives. Sites completed the PMT every 6 months for 54 months and monthly audits of 10 randomly-selected charts to verify readiness/self-care assessments and emergency care plans., Results: Of a possible 100, the aggregate mean (±SD) PMT score for paediatric clinics was 23.9 (±13.8) at baseline, 95.9 (±6.0) at 24 months and 98.9 (±2.1) at 54 months. The aggregate mean PMT score for adult clinics was 15.0 (±13.5) at baseline, 88.4 (±11.8) at 24 months and 95.8 (±6.8) at 54 months. The overall QI Collaborative PMT score improved by 402%. At baseline, readiness/self-care assessments were current for 38% of paediatric and 20% of adult patients; emergency care plans were current for 20% of paediatric and 3% of adult patients. Paediatric clinics had one median readiness assessment shift (76%) and four median emergency care plan shifts (65%, 77%, 79%, 84%). Adult clinics experienced three median self-care assessment shifts (58%, 63%, 70%) and two median emergency care plan shifts (57%, 70%)., Conclusions: The ST3P-UP QI Collaborative successfully embedded the 6CE of Health Care Transition into routine care and increased administration of assessments and emergency care plans for transition-aged patients with SCD., Competing Interests: Competing interests: IO received grant funding from HRSA and CDC and previously served as a consultant for Acceleron, Chiesi, Cyclerion, Emmaus, Forma Therapeutics, Global Blood Therapeutics and Novartis. PD received grant funding from CHL-Bhering, Forma, NIH, Novartis, Takeda, UPMC and UT Memphis and serves as an NMDP study monitor and Forma advisory board member. She has also consulted for Forma, Chiesi, Bluebird Bio and Vertex as an advisory member. RHL received grant funding from PCORI, served as a consultant for Novo Nordisk and Pfizer and served as a consultant for Forma Therapeutics. OAA was advisory board member of Novartis and Global Blood Therapeutics and receives grant funding from NIH, HRSA and CDC. All other authors have no relevant interests to declare., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.)