A survey of sickle cell patients transitioned to adult care from Texas children’s hematology center between January 1999 and January 2014

An estimated 93-98% of sickle cell disease (SCD) patients now reach adulthood in high resource countries. Studies show that this growing cohort of young adult SCD patients aged 18-26 years old experiences a marked rise in medical complications and early mortality, coinciding with decreased use of life-prolonging therapies and increased use of emergency care. Design/Method: 441 SCD patients transitioned from pediatric care at Texas Children’s Hematology Center (TCHC) between 01/1999 and 01/2014. We contacted these patients at their last known address and phone number to request completion of a 23 question survey assessing patient demographics, post-transition medical outcomes, and personal experiences. Results: 48 surveys were completed. 17 patients (35.4%) lack a provider, with top reasons being lack of insurance/funding (44%) and “can’t find a physician” (38%). Patients without an adult physician within 6 months of transition were less likely to have a physician currently (p<0.017). 83.3% of patients on hydroxyurea as pediatric patients (15/18) continued hydroxyurea therapy after transition. Subjects reported difficulties with finding knowledgeable adult providers, medical insurance, and inadequate transition preparation. Examples of qualitative results include comments such as the following: “The adult doctors are not aware of the disease…They have to call the pediatricians.” While another said, “[It was] hard finding a physician in the two years after TCHC [because of insurance loss]… my health worsened because I wasn’t getting the medication that I needed.” When asked, 94% of patients wanted a dedicated SCD transition clinic. 12 patients were identified as deceased from all causes. Abstract source