New insights into the educational achievements of 10 and 11 year olds in Wales with cystic fibrosis revealed that these children’s fare worse than the general population. As there is little known about the social consequences of living with cystic fibrosis, especially how it impacts a child’s education and whether they receive adequate support in schools, researchers conducted a population-scale data linkage study of all children born in Wales, the details of which have been published in the International Journal of Population Data Science (IJPDS).

Cystic fibrosis is a serious inherited condition. 1 in 2,500 babies born in the UK have cystic fibrosis, and there are over 10,000 people living with the condition in the UK today. A build-up of thick, sticky mucus in various organs causes severe damage to the lungs and digestive system in particular leading to premature death from respiratory failure. However, due to improvements in treatments and care, people with cystic fibrosis are living longer, healthier lives.

Anonymised health data and routinely collected administrative data for children born in Wales with cystic fibrosis between 2000 and 2015 was linked to their education records. This was then compared with the general population. The team also assessed the percentage of children with CF that received extra learning support.

The results indicate that having cystic fibrosis likely impacts children’s educational achievement, and has highlighted that more research is needed in this area. Additional research will help in the future development of policies and interventions to better support children with the condition to reach their full potential.

Daniela Schlüter, Lecturer in Public Health Data Science at the University of Liverpool commented that “Few studies have investigated educational outcomes of children with cystic fibrosis, due to lack of data availability. We addressed this in our study using the SAIL databank, to show that children with CF in Wales have worse educational achievements than the general population. This is an important first step that will lead to more research and data linkage in this area so we can develop better support for children with CF to succeed in education”.


You can read the full results of this study here

Dr Daniela Schlüter, Lecturer in Public Health Data Science, Institute of Population Health, University of Liverpool.

Schlüter, D. K., Griffiths, R., Akbari, A. and Taylor-Robinson, D. (2022) “Educational achievements of children aged 10-11 years with cystic fibrosis. A data linkage study in Wales”, International Journal of Population Data Science, 7(1). doi: 10.23889/ijpds.v7i1.1725.