Sickle Cell Disease Pilot Report Released
Picker Institute Europe, Sickle Cell Society and NIHR CLAHRC NWL release their pilot report on the Patient Reported Experience Measure for Sickle Cell Disease that was developed in joint partnership.
Sickle cell disease is often invisible in nature: people look well despite experiencing regular episodes of excruciating pain. It is important to understand their experiences of living with the condition to identify how we can improve their care.
A survey of patients with sickle cell disease and their families revealed that greater awareness of the condition, and more information about coping with pain and treatment options, would improve their experiences.
The survey also revealed poorer understanding and knowledge of the condition from staff in emergency care settings compared to specialist-led healthcare staff.
Further linksMore on the PREM tool from CLAHRC NWL