UK national standards for sickle cell disease in childhood: using audit to improve clinical care

Abstract

<h3>Background</h3> In the UK, Sickle cell disease (SCD) affects 1 in 2,400 live births and there is now a nationwide screening programme in place. There are currently estimated to be 12,500 individuals living with SCD in England where it is the most common and fastest growing genetic disorder. Treatment is aimed at reducing complications with preventative measures such as prophylactic antibiotics, immunisation, and cranial doppler ultrasound to assess stroke risk. <h3>Objectives</h3> This audit aims to compare local outcomes at the North Middlesex University Hospital with the recommended national standards for the management of sickle cell disease. This poster presents the results of 2 years of audit data (a full audit cycle) to assess whether recommendations made in 2009 have led to improvements in outcomes in 2010. <h3>Methods</h3> Information was retrieved via a retrospective database and notes audit of 249 patients on the haemoglobinopathy register at North Middlesex Hospital. Collated data was compared to national standards. <h3>Results</h3> The UK national standards for sickle cell disease, taken from 3 government documents (see references), were audited on 2 consecutive years. There are 13 national standards on the treatment and management of pediatric sickle cell disease covering recommendations for newborn screening, penicillin and pneumococcal prophylaxis, transcranial doppler ultrasound (TCD) scanning and annual review. Out of 13 national targets, 6 were met in 2009 and 9 were met in 2010. Patient non attendance appointments led to a number of standards not being met in both years. <h3>Conclusions</h3> Improvement in meeting national targets occurred between 2009 and 2010 as a result of the audit process and subsequent recommendations such as changes to note keeping, the introduction of patient held records, family clinics, and the introduction of after school appointments for adolescents. The audit process itself highlighted issues such as patient non attendance and its impact on meeting standards. Non attendance remains a costly and troubling problem to the NHS where there has been a great impetus to look at the cost analysis of providing services. Steps are now being taken to reduce non attendance including a research project examining the correlation between social factors and non attendance.