Sickle Cell Bundle Cluster Randomised Trial Project

Background 

A recent parliamentary inquiry into avoidable deaths and failures of care for sickle cell patients in secondary care identified that too often acute painful sickle episodes are poorly managed by the NHS.  It recommended that the NHS Race and Health Observatory (NHSRHO) undertake a study into sickle cell care in relation to race and ethnicity. In collaboration with the National Haemoglobinopathy Panel, the UK Forum on Haemoglobin Disorders, and the Sickle Cell Society, NHSRHO decided to commission research to identify means of robustly improving the management of acute painful sickle cell episodes. 

It is hoped that this research identifies potential interventions to improve the management of acute painful sickle cell episodes and develops a peer-reviewed cluster randomised trial protocol to rigorously assess them. The purpose of developing and publishing this research protocol is to catalyse research, and improvement, in this area. 

Why this work is important

Sickle cell disease predominantly affects people with African or Caribbean heritage. A report by the Sickle Cell Society and All-Party Parliamentary Group highlighted inequalities in healthcare experience and variability in treatment for people living with sickle cell. This report also exposed a worrying shortfall in adequate care and treatment for sickle cell patients. Management of pain during acute painful sickle cell episodes is consistently reported to be a priority area by patients and their carers. 2012 NICE guidance recommends research to inform analgesic approaches in this area. 

Aim 

To develop a trials protocol for a study to improve pain management during acute painful sickle cell episodes and publish it in a peer reviewed journal. 

Project outputs 

A high quality trial protocol which is suitable for publication in a peer-reviewed journal (and forming part of a grant proposal). 

Timelines 

The study began in January 2023 and is expected to conclude early 2024. 

Further information 

For further information please contact Dr Carl Reynolds (Senior Clinical Advisor) at info@nhsrho.org