Patient-reported experience measure in sickle
cell disease

Sickle cell disease (SCD) is one of the most common inherited disorders among newborns in England with significant health outcomes, with around 300 babies identified annually in England. However, evidence from the UK suggests prevalence of prejudicial treatment of this condition with over 50% of children experiencing delays in receiving pain relief during vaso-occlusive episodes. This is likely to be due to innately episodic nature of the symptoms and requirement of opioid-based treatments leading to poor patient experience and outcome.

To overcome this stigma, Picker set out to develop patient-reported experience measure surveys for patients with SCD to understand their healthcare and lived experience in the UK and for their use in future to inform healthcare service development. In a study published by BMJ, Picker describes the PREM development process, explores its validity, and outlines the pilot findings on the healthcare and lived experience of patients with SCD.