Khalid Ahmed: The HALO Study to Understand Quality of Life After Childhood Hematological Disorders
Khalid Ahmed, Haematology Registrar at Sheffield Teaching Hospitals NHS Foundation Trust, shared on LinkedIn about a recent article he and his colleagues co-authored, adding:
“I am delighted to share with you the first publication (protocol paper) in this vital research project. While survival rates for children with severe blood disorders like Sickle cell disease, transfusion dependent beta thalassaemia, and acute leukaemia have dramatically improved, we still know far too little about their quality of life after survival. What are their long term physical, mental and social outcomes? How surviving childhood condition impacts education, employment and family life?
The HALO study (Health outcomes in adults survivors of severe haematological disorders in childhood) led by reseachers across Northern England is designed to find out. This is not just a study; it is the most extensive data linkage and patient reported outcome analysis of these diseases in the UK.
This project is vital because:
- It centres the patient voice by directly asking survivors using validated surveys.
- It connects the dots by securely linking national data on hospital use,mental health, and reproductive outcomes.
- It addresses health inequality since SCD and TDT affects primarily people of ethnic minorities.
- The insights will guide the NHS in designing better support services, counseling programs, and follow up care for thousands of adults living with the long term effects of these conditions.”
Title: Adult survivors of sickle cell disease, transfusion-dependent beta-thalassaemia and childhood acute leukaemia in England: protocol for a mixed methods data linkage and health-related quality of life survey study
Authors: Khalid Ahmed, Ivana Holloway, Kate Absolom, Samantha J Mason, Ruben Mujica-Mota, Georgios Gkountouras, Adam Martin, Thuvia Flannery, Michael Richards, Emma Astwood, Sam Ackroyd, Brigit Greystoke, Diana M Greenfield, Quentin Hill, Beki James, Michelle Kwok- Williams, Robert D Murray, Clare Samuelson, David Simcox, John A Snowden, Joseph Sharif, Nandini Sadasivam, Richard Feltbower, Adam Glaser
Read the Full Article on BMJ Open
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