Experiences and Perceptions on Transitioning from Pediatric to Adult Care Among Patients with Sickle Cell Disease in an NYC Hospital

Abstract

Sickle Cell Disease (SCD) is a genetic disease and a major global public health concern. The transition process from pediatric to adult care is complicated and frustrating for many patients and physicians. This qualitative, phenomenological study explored the perceptions and experiences of Physicians-In-Training (PIT) and young adult patients regarding the transition process from pediatric to adult care. A total of 12 participants (four pediatric PIT and eight young adult patients with SCD) from a hospital in New York City participated in the study. Data were collected through semi-structured interviews, which were audio-recorded, transcribed, and hand-coded into themes. The findings revealed that young adults with SCD had negative experiences and perceptions throughout the transition process. Inadequate information about the transition, poor relationships with adult providers, and long waiting times in the ER reduced the quality of care of patients with SCD. Social support during the transition process came mainly from their parents. Young adults believed that there should be a better relationship with the adult providers, and that patients with SCD and the adult clinical team should be educated about the transition process. Seventy-five percent (75%) of the PIT mentioned that transition to adult care usually starts at age 21; however, they believed that the transition process should start at age 15. They lacked knowledge about the transition process and support services for patients with SCD. They also reported hesitation of pediatric patients to transfer to adult care. They expressed concern that young adults might not be adherent to their medications and schedule their appointments when needed. The transition process should include adequate preparation, patient education, social support, communication between pediatric and adult settings, and a relationship between patients and adult providers.