Invest early: how to improve the health of young adults with epilepsy

The health of young adults in the UK is a growing concern. Overall death rates among those under 24 years old are increasing, with deaths from long-term conditions such as epilepsy and diabetes much higher than in comparable high-income countries.

In this blog we present a new study, which suggests that early investment in higher quality, more joined-up paediatric services could be key to reducing deaths among young adults with epilepsy. We also reflect on the wider lessons for improving the health of young people in the UK.

A new approach to an age-old issue

Advocates for adolescent health have long argued that prevention is better than cure, and that investment in high-quality, joined-up services in childhood and adolescence can lay the foundations for better health and wellbeing throughout life.

But there’s limited empirical evidence to demonstrate the link between quality of paediatric care and adult health outcomes. Historically, these questions have been very difficult to study, as clinical trials are rarely big enough to investigate the causes of death among young people, and they don’t usually follow up patients after they’ve moved to adult services.

In our study, we took a new approach, linking national datasets on the quality of paediatric epilepsy care, hospital activity and death registrations. The scale of this study (which followed up 1,795 adolescents with epilepsy from 99 hospitals for up to six years, of whom 134 [7.5%] died) allowed us to investigate for the first time the links between quality of paediatric care and adult outcomes.

We found that adolescents with epilepsy who were managed in high-performing services (specifically those with better links to specialist paediatric neurology teams) were less than half as likely to die in early adulthood, when compared to similar patients who were managed in lower-performing units. In absolute terms, there were five fewer deaths per 100 patients in high compared to lower-performing units.

Interestingly, we did not find any difference in death rates while patients were under paediatric care (i.e. below the age of 16-18). This might suggest that when paediatric services are more stretched, they tend to focus more on short-term issues and are less able to invest time in preparing young people for managing their epilepsy independently as adults. Similarly, more stretched paediatric services may find it harder to build the local relationships and links they need to provide a joined-up service during the transition from children’s to adult services.

Coming of age but new challenges to face

So why does early adulthood seem to be such a risky time for those with long-term conditions? Firstly, while young people today are healthier than previous generations on some important measures (such as being less likely to smoke or drink excessive alcohol), they also face growing challenges. Education, employment and financial pressures contribute to stress, mental health problems and high rates of suicide, and other potentially avoidable deaths.

Secondly, many young people face challenges of moving away from home, adjusting to new jobs or university life, and exploring new opportunities. For young people with long-term conditions, all these challenges are compounded by the need to manage medication and negotiate unfamiliar and often fragmented health services independently – receiving continuity of care can be particularly challenging.

The earlier the better

While the health service can’t solve these problems alone, rethinking health services for young adults in a way that reflects and meets their distinct needs has great potential to mitigate their impact on health outcomes. Too often, young adults with epilepsy don’t have access to a specialist service – either because none exists locally or because they’re deemed to not meet the threshold for specialist support.

Even where specialist epilepsy services are available, they’re often targeted more at older adults. So better support for young people after transition to adult services, as well as new models of care such as dedicated clinics and group clinics for young adults, certainly deserve further attention and evaluation.

But the key lesson from our study (supported by our clinical experience) is that high-quality, age and developmentally appropriate services are most effective when they start early, and that doing so can transform a wide range of outcomes in adult life. Our study looked at mortality, but young people and families tell us that early access to more integrated and accessible services can have a long-term impact on their social life, allow them to be identified and treated earlier for mental health problems, and help contribute to greater success in education and employment.

When resources are so limited across the NHS, it’s right that we need to show robust evidence if we’re going to call for greater investment in services for adolescents and young adults. But when the impact of early investment is so clear, then there are compelling financial, as well as moral, arguments for doing so.

The NHS Long Term Plan offers a once-in-a-generation opportunity to integrate services and improve outcomes across the board for children and young people under 24 years old. It is essential that the plan is both based on the best evidence and adequately funded if these goals are to be met.

*Dougal Hargreaves is a Visiting Research Analyst at the Nuffield Trust and an Honorary Consultant Paediatrician at University College London Hospital. Colin Dunkley is a Consultant Paediatrician at Sherwood Forest Hospitals.

Dougal and Colin are co-authors of an article published yesterday on The Lancet Child and Adolescent Health website, which revealed the findings of a national longitudinal data linkage study on the association of quality of paediatric epilepsy care with mortality and unplanned hospital admissions among children and young people with epilepsy in England.

Their co-authors on that article are Sandeepa Arora, Carolina Viveiro, Daniel Hale, Joseph Ward, Chris Sherlaw-Johnson, Russell Viner and Helen Cross. Affiliations can be seen on the article.

Funding for the study was from the Health Foundation.