Making Every Young Adult Count

New research shows that the number of young adults with life-limiting conditions has increased significantly over the last eight years.

The Making Every Young Adult Count: Estimating Current and Future Prevalence of Young People with Life-limiting and Life-threatening conditions in England study, conducted by the University of York and University of Leeds, reveals that the total number of young adults (aged 14-25 years) with life-limiting conditions in England has increased from 27,316 in 2009/10 to 38,261 in 2017/18 – an increase of 40%. This figure includes those diagnosed in both childhood and young adulthood.

Looking just at the number of young people with a life-limiting condition who were diagnosed in childhood, the increase is higher, rising from 16,107 in 2009/10 to 24,773 in 2017/18, an increase of 53%. This research provides valuable insight into the numbers of children who are likely to make the transition to adult services. The data will help services to better plan their support for young people and families in preparing to move on to adult services and will also help commissioners to fund the right services. That more young adults are living longer is to be celebrated and it is imperative that adequate services are put in place to ensure that these young adults and their families can live life to the full.

Some of the research’s key findings include:

• The overall number of young people aged 14-25 with a life-limiting condition identified in this dataset from England rose from 27,316 in 2009/10 to 38,261 in 2017/18 – an increase of 40%.
• The numbers of young people with a life-limiting conditions who were diagnosed whilst still in childhood rose from 16,107 in 2009/10 to 24,773 in 2017/18 – an increase of 53%.
• The prevalence of young people with an life-limiting conditions who were diagnosed whilst still in childhood rose from 19.7 per 10,000 in 2009/10 to 30.2 per 10,000 in 2017/18.
• Prevalence was highest for congenital, oncology and neurology conditions. Among young people diagnosed as children, congenital disorders are also the most prevalent.
• Prevalence was significantly higher among females (50.8) compared to males (42.8) per 10,000.
• Prevalence of life-limiting conditions was highest amongst young people of Pakistani origin.
• More young people than expected with a life-limiting condition lived in areas of higher deprivation.
• Overall, most deaths occurred in hospital (55-64%). Home deaths (31%) were more common among young people who died over the age of 25 years. The proportion of hospice deaths was higher in young adults aged 18 or over who were diagnosed as adults (10%) compared to those diagnosed as children (7%).
• Although it is difficult to predict, it is estimated that the national prevalence of life-limiting conditions in young people will increase over the next ten years. The number had increased from 33.5 per 10,000 in 2009/10 to 46.7 per 10,000 in 2017/18 and is estimated to increase to up to 62.2 per 10,000 by 2030.