Transitioning to adult care among adolescents with sickle cell disease: A transitioning clinic based on patient and caregiver concerns and needs (pp. 537-545)
Authors: Robert D. Latzman, Suvankar Majumdar, Carolyn Bigelow, T. David Elkin, Mary G. Smith, Gail C. Megason, Priya Srivastava, and Rathi Iyer
Abstract: Transition from pediatric to adult health care has been identified as a very difficult time for the adolescent with SCD. While there is good evidence for the need of transitional programs, there is little data available on the outcome of such interventions. The current study assessed the general feelings and attitudes regarding transition of health care in patients with SCD, and the effectiveness of a transitional sickle cell clinic model with regard to psychological outcomes. Procedure: A questionnaire with overall measures of transitional-related concerns and needs and general feelings regarding transition from pediatric to adult care was administered to patients/caregivers attending a pediatric sickle cell clinic, a transitional sickle cell clinic and an adult sickle cell clinic. The transitional clinic is run in parallel with the adult clinic and staffed by a pediatric hematologist already known to the pediatric patients. Results: The number one area of concern for pre-transition patients was meeting new caregivers. Caregivers of pre-transition patients identified leaving behind the previous doctor as the number one area of concern. The most important concern for patients both in the transitioning and adult clinic was being seen in the adult emergency room. Compared to both pre-transitioning and adult clinic patients, transitional patients reported significantly lower levels of negative affect (fear and sadness; p<0.001), and higher levels of positive affect for joviality (p<0.01). Conclusion: The transitional sickle cell clinic model appears to be promising to help SCD patients cope with the transitioning process.