Painful crises in sickle cell disease - Patients' perspectives

Abstract

One hundred and two patients returned structured questionnaires sent to clinics for sickle cell disease in the United Kingdom in order to gain greater insight into the patients' perception of painful crises. Most patients who suffer pain crises experience a prodromal stage that should be investigated further to find out if prophylaxis is possible. Cold, exertion, and tiredness were the most important precipitating factors. Despite the increase in the amount of knowledge about sickle cell disease in recent years, and though 29 out of 88 patients (30-40%) believed that medical services were improving, 33 out 88 (30-40%) were still experiencing long delays in being treated in hospital. A third of patients do not seem to receive adequate pain relief.