A new multinational survey, on more than 1,300 patients, caregivers and healthcare professionals in 10 countries, shines a needed light on the misunderstood realities, unseen burden and care challenges of sickle cell disease. The Sickle Cell Health Awareness, Perspectives and Experiences (SHAPE) survey, one of the largest global burden of disease surveys conducted in sickle cell disease, identified long-term health complications of sickle cell disease as a key concern among 1,300 patients and healthcare professionals surveyed from 10 countries The survey also revealed that sickle cell disease patients' caregivers face profound physical, psychosocial, and economic burdens resulting from taking care of people living with the disease. The findings of the survey were presented during a poster presentation at the European Hematology Association (EHA) 2022 Hybrid Congress.
“Sickle cell disease is a lifelong condition that causes damage in the body and has a profound impact on the quality of life of those who suffer from it and their caregivers. The SHAPE survey is important because it illustrates how vital it is that we understand our patients’ needs, and it suggests what we within the medical community can do to help change perspectives, increase education and awareness, and improve care,” said Dr. Baba Inusa, professor and consultant of paediatric haematology, Guy’s and St Thomas’ NHS Foundation Trust, London and chair of the National Haemoglobinopathy Panel in England. “These results are a wake-up call, and I believe that the actions that follow can enable us to help drive a better dialogue and improved conversations around the management and care of this long-neglected and devastating disease.”