Haematology Lived Experiences and Outcomes (HALO) v1.0
Research type
Research Study
Full title
Health related quality of life and resource needs of survivors of leukaemia and life-threatening haematological disorders in young people Haematology Lived Experiences and Outcomes (HALO)
IRAS ID
336672
Contact name
Jean Uniacke
Contact email
Sponsor organisation
University of Leeds
Duration of Study in the UK
2 years, 11 months, 30 days
Research summary
Young people diagnosed with the most common forms of childhood blood cancers, acute lymphoblastic leukaemia and acute myeloid leukaemia, are more likely than ever before to survive. Many become long-term survivors of cancer with increased risk of physical health problems later due to their treatments. However, we know less about their psychological and social function.
There are other non-cancer life-limiting serious inherited blood disorders usually diagnosed in childhood including sickle cell disease and beta-thalassaemia. Although treatments are similar to leukaemias, outcomes of these treatments and the quality of life of those living with them are less understood due to lack of research studies. These conditions almost always occur in non-white people, who are known to be at greater risk of health and social inequalities than the white population.
People diagnosed with these conditions are at major risk of premature death and the development of long term physical, psychological and social consequences of their diagnosis and treatments. Building upon our expertise in studying groups of childhood cancer survivors, we will generate new knowledge about the long-term effects of survival from these conditions. We will survey those aged 18+ years about their quality of life, health and social outcomes.
We will study people diagnosed from January 1990 under the age of 18 years with acute leukaemia in Yorkshire and all those diagnosed with the most common forms of sickle cell disease and beta-thalassaemia in the North of England. Wherever national population data are available, we will extend the study to the whole of England.
The study will increase understanding of the late consequences of survival of haematological conditions of childhood. This novel intelligence will allow health and social care services to provide appropriate care and support to improve both the efficiency of care delivered and the quality of survival of affected individuals and their families.REC name
Yorkshire & The Humber - Leeds East Research Ethics Committee
REC reference
24/YH/0186
Date of REC Opinion
9 Sep 2024
REC opinion
Favourable Opinion