The study estimates that there are 40,000 children in England who are living with incurable conditions such as severe cerebral palsy, muscular dystrophy and neurodegenerative disorders.
This figure is twice the level of previous estimates, according to the research and the prevalence of these conditions among birth to 19-year-olds rose from 25 to 32 per 10,000 between 2000 and 2010.
"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," said report co-author Dr Jan Aldridge, consultant clinical psychologist at Martin House Children’s Hospice.
"Statutory services are either non-existent or struggle to meet the needs of these older teenagers and young adults."
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