Survey Development:
A survey was developed to address patients’ connection to adult providers, health care utilization including outpatient and inpatient visits, satisfaction and trust in adult health care providers, and information regarding their transition experience (Appendix 1). The Trust in Physician scale20 and portions of the Patient Satisfaction Questionnaire Short-Form (PSQ-18)21,22were utilized to assess patient trust and satisfaction respectively. Questions regarding prescription and adherence to hydroxyurea, ED and hospital visits, and satisfaction with care provided in those visits were included. Lastly, subjects were asked to assess their satisfaction with perceived preparation for the transition process, ending with open-ended questions for feedback on how to improve this process. The completed survey was entered into Qualtrics to facilitate data collection and export for analysis.