Date Published: 12 March 2012

More children with life-limiting diseases surviving into adulthood

Health News from Leeds, England (UK).
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The number of children diagnosed with "life-limiting" conditions such as muscular dystrophy, neurodegenerative disorders or severe cerebral palsy who are surviving into adulthood is higher than previously recognised - according to a recent study from Leeds University (England, UK).
The meaning in this context of "life-limiting conditions" in children is medical conditions for which current medical opinion offers "no reasonable hope of cure, and from which children will die". This includes as "life-threatening conditions", medically diagnosed conditions for which curative conventional medical treatment may be considered feasible but sometimes fails, such as cancer. In the recent study reported by Leeds University scientists, the definition of "life-limited conditions" was included "life-threatening" conditions.

Their study indicated that the number of children and young adults in England with a "life limiting condition" is far higher than had previously been thought and is increasing every year. As numbers continue to rise, this is expected to result in increasing demand for paediatric palliative care services and young adult services, especially in deprived areas of the country.

Experts agree that children who are born with or contract an illness that can shorten their life, and who may not reach adulthood, should have access to specialist palliative care, such as paediatric palliative care (meaning palliative care specifically for children; paediatrics is the medical specialty concerned with the general medicine of childhood.). This can make an enormous difference to the child's quality of life and that of their family members. Information about use of children's hospice services is collected by the charity Together for Short Lives. However, the total number of children who have received any form of specialist palliative care or who might require such services in the furure is not recorded nationally. Even local data is considered "patchy". This has prompted concerns that health authorities may be underestimating the level of provision that is needed, leaving existing services under-resourced and overstretched.

To address this gap in knowledge, researchers at Leeds University considered NHS data on children's admissions to hospitals in England from 2000 until 2010 and used an internationally recognised coding method to classify the medical conditions being treated. They found that for 2010, the prevalence of life limiting conditions in under-19s was 32 in 10,000 - exactly double the figure previously reported. From this, they estimate that there are about 40,000 children in England who are currently living with a life limiting condition.

The results of the study indicate a steady increase in the number of children living with a life limiting condition, particularly in the 16-19 age group. This suggests that the rising need for support associated with these conditions, including e.g. paediatric palliative care, is being driven by longer survival times rather than a rise in the incidence of disease. The prevalence of life limiting conditions was also notably higher in some ethnic minority populations and areas of socio-economic deprivation.

University of Leeds researcher Dr Lorna Fraser, who led the study, said:

" Children and teenagers with life limiting medical conditions will often need many years of specialist palliative care before they reach the end of their life, making it all the more important that their needs are not overlooked. Our study has confirmed doctors' suspicions and identified an escalating need for specialist paediatric care services. It is vital that health authorities now take this message on board and plan accordingly."

Dr Jan Aldridge, Consultant Clinical Psychologist at Martin House Children's Hospice, and one of the co-authors of the research, said:

" Significant numbers of children with life-limiting conditions are living longer now, thanks to advances in medical care, but for many such children life gets harder as they get older. Statutory services are either non-existent or struggle to meet the needs of these older teenagers and young adults. At the moment, these children and their families place great value on the all-round support package provided by hospices such as Martin House, which help to address their medical, social and emotional needs. This model of specialist holistic care is one that health authorities and other services might draw upon."

Barbara Gelb, CEO of the UK children's palliative care charity, Together for Short Lives, added:

" This study affords a real opportunity to better understand need and should help commissioners and service providers alike to better plan and deliver sustainable services when and where they are most needed. As the study shows, more young people with long term conditions are living longer; however we know that the specialist services they need are not meeting demand. Although there are some excellent services for young people; there are still major gaps in service provision and young people struggle to find appropriate care, housing, education and the work and social opportunities that they deserve."


Ref. to Paper:
L Fraser et al. Rising National Prevalence of Life-Limiting Conditions in Children in England, Pediatrics 2012;129:1-7 (

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Source: Leeds University, England (UK)

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