Advances in care and treatment for muscular dystrophy, neurodegenerative disorders and severe cerebral palsy have allowed a growing number of children with such conditions survive into adulthood, a new study shows.
But researchers from the University of Leeds reported so many have such “life limiting condition” that health-care expects have dramatically underestimated their numbers. The study, published in the journal Pediatrics, also found those numbers are increasing every year, and as they continue to rise, it will place a growing burden on pediatric care providers and young adult services.
The study, which is published in the journal Pediatrics, was 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.
"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,” said University of Leeds researcher Dr. Lorna Fraser. “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."
For the study, researchers tracked children's admissions to hospitals in England from 2000 until 2010 for “life-limiting conditions.” They found that for 2010, the number of those under 19 years old who were hospitalized was twice as many as past studies have shown.
The results also showed a steady increase in the number of children living with a life-limiting condition, in the 16-19 age group.