U. LEEDS (UK) — The number of children living with “life-limiting conditions” who are surviving into adulthood is far higher than previously thought and is increasing each year, straining pediatric palliative care providers, a new study shows.
Life limiting conditions are those for which there is no reasonable hope of cure and that will ultimately be fatal, including muscular dystrophy, neurodegenerative disorders, or severe cerebral palsy.
The total number of children in England who have received any form of specialist palliative care—or who might need it in the future—is not recorded nationally and local data is patchy, researchers say. The gap is prompting concern that health authorities may be underestimating the level of provision that is needed, leaving existing services under-resourced and overstretched.
For the study, published in Pediatrics, researchers took NHS data on children’s admissions to hospitals in England from 2000 until 2010 and used an internationally recognized 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 showed 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 growing need for support associated with these conditions is being driven by longer survival times rather than a rise in the incidence of disease. The prevalence of such conditions was also notably higher in some ethnic minority populations and areas of socioeconomic deprivation.
“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,” says University of Leeds researcher Lorna Fraser, who led the study. “Our study has confirmed doctors’ suspicions and identified an escalating need for specialist pediatric care services. It is vital that health authorities now take this message on board and plan accordingly.”
Jan Aldridge, consultant clinical psychologist at Martin House Children’s Hospice, and one of the co-authors of the research, says: “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 Together for Short Lives, a UK children’s palliative care charity, adds: “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.”
The study is a collaboration between the University of Leeds, Martin House Children’s Hospice in Yorkshire, and the Children’s Hospital, Cardiff. It was funded by the charity Together for Short Lives.
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