Journal of Blood Disorders & Transfusion

Abstract

Transition to Adult Care: A Statewide Survey among Pediatric Hemoglobinopathy Specialty Centers in New York

Ying Wang, Keewan Kim, Katherine Harris, Geraldine Roth, Christopher Kus, Marilyn Kacica and Michele Caggana

Background: Transition from pediatric to adult medicine for young adults with special health care needs to be performed in an uninterrupted, patient-centered and comprehensive manner. In order to assess the health care status of children with hemoglobinopathies and identify plans and barriers in transition from pediatric to adult care, we conducted a statewide survey among hemoglobinopathy specialty care centers that receive newborn screening referrals. Methods: An invitation via email with a link to the web-based survey containing 16 questions regarding transition to adult care was sent to center directors of all 33 hemoglobinopathy specialty care centers in New York State. Non-responders were contacted and asked to complete the survey over the phone. Results: Overall, 28 (85%) of 33 centers completed the survey. Adult care was provided in all responding centers; 39% had transition plans/programs in place and 50% were in the process of developing a transition program. Current patient census figures ranged from 4 to 550 for sickle cell disease, and 1 to 130 for thalassemia. The maximum age of pediatric admission was from 18 to 28 years, and the transition occurred in between 18 and 25 years of age. With regard to the mode of transition, 75% of the transfers were initiated because of age or pregnancy and 57% of the transfers were based on the individualized transition plan. Financial difficulty, adolescent or family resistance, and differences between pediatric and adult centers were cited as the barriers to transition by more than 50% of the Centers. Conclusions: In New York State, most transition is guided by an individualized and prepared transition plan. Financial support and assurance of adult care for patients and families are necessary.