Transfer of care for people with severe forms of thalassemia: Learning from past experiences to create a transition plan

Purpose: To demonstrate the need for developing standardized healthcare transition plans for persons with severe forms of thalassemia as life expectancy continues to improve. Design and methods: This study utilized an original questionnaire to explore the factors that determined whether individuals residing in North America transferred their thalassemia care from a pediatric to an adult specialist, and what components they believed should be included in a healthcare transition plan. Results: Approximately one-third of respondents remained under the care of a pediatric hematologist, most com-monly citing the thalassemia knowledge of the specialist as their reason for not transferring their care. Addition-ally, this group also reported more thalassemia-related services available at their healthcare facility, better access to flexible hours for blood transfusions and increased satisfaction with their care. Adults with thalassemia recom-mend enhanced communication between patient and provider and building opportunities for patients to assume the role of self advocate as key components for a healthcare transition plan. Conclusions: There is an inconsistency in the transfer-of-care experience of adults with severe forms of thalasse-mia living in North America. Development of a healthcare transition program would benefit from the input of those who have gone through this process. Practice implications: A well informed healthcare transition program can enhance the quality of life of those with thalassemia. The training and educational background of nurses and genetic counselors make them uniquely qualified to guide patients on how to advocate for themselves and to ensure continuity of care during a healthcare transition. (c) 2021 Elsevier Inc. All rights reserved.