The case for dedicated sickle cell centres

Abstract

In Jamaica the word transition means death, but in the sickle cell vocabulary of the United States it refers to the transfer from paediatrician to adult physician. Most patients with sickle cell disease are now identified at birth and are followed by paediatricians with an interest in and knowledge of the disease. Then at an arbitrary age—12, 16, or 18 years, depending on the institution—patients must leave the doctor they have known from birth and are referred to a usually unknown doctor. The result is that many patients default from follow-up at a critical time of adolescence, when they face problems of delayed physical and sexual development, enuresis, leg ulcers, priapism, and an increasing incidence of bone pain crises. Is this disruption in clinical care necessary? Yes, the administrators say; but then we should ask whether the patients are there for the system or the system is there to serve the patients. Is it possible to provide a seamless service for clinical care of sickle cell disease? Are the demands of managing these patients sufficiently different from those of other …