Patients with beta thalassemia are benefitting from longer life expectancies, highlighting the importance of appropriate transition from pediatric to adult care. Data are limited regarding continuity of care and adult hematologists' management of patients with beta thalassemia. We conducted a survey of practicing US hematologists to identify practice gaps, attitudes, and barriers to optimal patient management among US-practicing hematologists. A total of 42 responses were collected, with 19 (45%) practicing at a beta thalassemia center of excellence (CoE). Nearly 90% of CoE physicians said they had a transition protocol or plan in place versus 30% of non-CoE physicians. Most physicians said parents should remain actively involved in medical visits. Adherence was rated as the most important patient education topic during transition. The most significant barrier cited was patient reluctance to transition away from pediatric care. Physicians in CoEs as compared with non-CoE physicians reported greater knowledge of beta thalassemia and familiarity with butyrates, gene therapy, and luspatercept. Highly rated topics for beta thalassemia-focused CME activities included management of complications and clinical trial updates. These findings suggest practice gaps and barriers to optimal care in the transition from pediatric to adult care, the ongoing management of adult patients, knowledge of the disease state, and familiarity with emerging treatments. Differences CoE vs non-CoE physician responses suggest variations in knowledge, practice, and attitudes that may be helpful in tailoring CME activities to different learner audiences. The small sample size used in some sub-analyses may not be representative of all hematologists treating beta thalassemia patients.
Keywords: Continuing educational needs; Quality of life; Thalassemia; Transition of care.