Aim: To assess patients' and parents' perspectives on the impact of infliximab treatment on daily life and the acceptability and feasibility of (infliximab or adalimumab) home treatment, in the light of the perceived value of hospital services. Methods: A descriptive qualitative study was conducted at University College Hospital London. Data were collected via 25 semi-structured interviews with patients (aged 14-19) from both gastroenterology and rheumatology specialties, prescribed infliximab, and their parents. Results: The majority of participants preferred to continue infliximab treatment at their current hospital, rather than be treated in their local hospital or at home. The main reasons were the specialised care in their current hospital, the continuity of care and hospital staff, resistance to the method of adalimumab administration and expected problems with compliance. Hospital services were highly valued and current infliximab treatment at the hospital was considered to have either no impact on family and school life, or to have improved it. Conclusion: Infliximab is an effective therapy for inflammatory bowel diseases and rheumatology conditions in young people, bringing either no negative impact on, or improvement of school and family life. In association with patients' and parents' positive appraisal for hospital services and their confidence in the clinical team, patients and parents do not express a preference for infliximab or adalimumab home treatment, despite current health policy aimed towards therapy closer to, or at, home.
Sickle cell anaemia, the most prevalent genetic disease in the black population, is characterised by the polymerisation of the abnormal haemoglobin S, which leads to vascular occlusion and severe painful crisis. Hydroxyurea is the fi rst drug that has been shown to reduce the clinical severity of sickle cell anaemia in adults. Several trials have been carried out in more than 400 children in the last decade, using different therapeutic schedules. Enrolment was based on clinical vasoocclusive severity and few studies included children with cerebrovascular events. Hydroxyurea enhanced fetal haemoglobin expression in almost all the children, despite a large interindividual variability. Hydroxyurea signifi cantly reduces the number of vasoocclusive crises, hospitalisations, the frequency of the acute chest syndrome and the rate of transfusion. Long-term tolerance to hydroxyurea is good. However, clinical response does not correlate consistently with the degree and with the time of increment in fetal haemoglobin, suggesting that hydroxyurea may mediate some of its clinical benefi ts through other mechanisms such as the reduction of sickle erythrocytes – endothelial cells adherence and of the vasoconstrictive stimulus.
