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Continuous Manual Exchange Transfusion for Patients with Sickle Cell Disease: An Efficient Method to Avoid Iron Overload
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Patient-reported experience measure in sickle cell disease
Subarna Chakravorty1,2, Amy Tallett3, Cara Witwicki3
1Paediatric Haematology, King's College Hospital NHS Foundation Trust, London, UK.
Archives of Disease in Childhood
|August 6, 2018
Summary
New patient surveys for sickle cell disease (SCD) in the UK reveal significant gaps in public and provider knowledge. Patients experienced poorer care in emergencies and adolescents reported worse experiences overall.
Area of Science:
- Health Services Research
- Patient Experience Measurement
- Sickle Cell Disease Management
Background:
- Sickle cell disease (SCD) impacts numerous patients in the UK, necessitating tailored healthcare experiences.
- Existing measures may not fully capture the nuances of SCD patient journeys and lived experiences.
Purpose of the Study:
- To develop and validate patient-reported experience measure (PREM) surveys for individuals with SCD in the UK.
- To inform future healthcare service development and quality improvements for the SCD population.
Main Methods:
- Employed Picker methodology, including focus groups, stakeholder consultations, cognitive testing, and a nationwide pilot survey.
- Surveys were administered via web, face-to-face, and at community events to ensure accessibility.
Main Results:
- Identified widespread poor knowledge of SCD among healthcare providers and the public.
- Revealed poorer patient experiences in emergency care settings, particularly regarding timely pain relief.
- Adolescents and young adults reported significantly worse care experiences across multiple domains compared to children and older adults.
Conclusions:
- Developed valid and accessible PREM surveys for the UK SCD patient population.
- Findings underscore critical areas for targeted interventions to improve SCD care quality and patient satisfaction.
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