Living with Sickle Cell Disease: the Perspective of Young People

The study aimed to explore the lived experience of young people with sickle cell disease as they transferred to adult services. A cross-sectional study using semistructured questionnaires is described. Eleven young people (12-16 years) attending a sickle cell and thalassaemia centre as they approached transition from paediatric to adult services were successfully recruited to the study. Sickle cell disease was reported to interfere with various aspects of their 'normal' lives. Fatigue and pain were common symptoms. Reported adherence to prophylaxis was variable. It was concluded that young people with sickle cell disease require support drawing on a range of expertise and that the medical model of service delivery may not meet all their needs.