Two thirds of children who die have a chronic condition, finds new study

Efforts to prevent deaths in children must focus on improving the quality of care for children with chronic conditions and their families, according to a major new study into child mortality launched by the Royal College of Paediatrics and Child Health (RCPCH). 

With two thirds of children dying with chronic conditions – up to 40% of those neurological – researchers say more information is needed on the proportion of children who have chronic conditions that are terminal, in order to improve end of life care for these children and their families.

Other findings from the report include:

• Overall child mortality has declined by over 50% in last 30 years 
• Injuries are the single biggest cause of child deaths 
• Young maternal age remains a risk factor throughout childhood 

Professor Ruth Gilbert, UCL Institute of Child Health and clinical lead for the research, said: “Although the overall number of children dying is decreasing, this research puts into sharp focus the importance of optimal care for children with chronic conditions. For some children with serious chronic conditions who are expected to die, this means high quality end of life care for the child and to support their families. For others, their death may have been premature or completely preventable. Most children with chronic conditions are managed at home by parents with support from primary and community care services as well as hospitals. We need to focus on the quality of long-term care at home for these children as well as in hospital.

“Today’s report also shows that despite a decline in the overall child mortality rate and a decline in deaths due to accidents, injury remains the most frequent underlying cause of death, accounting for between 31% to 48% of deaths in children aged 1-18 years. The number of children dying from intentional injuries – such as self-harm or assault – has not changed in three decades.

“The report also reveals that children born with the same birth weight were more likely to die if they were born to mothers aged less than 30 years than those with mothers aged 30 to 34 years. Young maternal age does not cause child deaths but is associated with factors which increase health risks for children.”

Professor Gilbert added: “Young maternal age at birth is becoming a marker of social disadvantage as women who have been through higher education and those with career prospects are more likely to postpone pregnancy until their 30s. The increased risk of death for children of mothers under 30 persisted up to nine years of age but the biggest difference in deaths was for infants aged between one month and one year. Universal policies are needed to address these disparities. Targeting support only at first-time teenage mums misses most of the problem.”

The study, commissioned by the Healthcare Quality Improvement Partnership, is part of the Clinical Outcome Review Programme: Child Health Reviews - UK (CHR-UK) project.  It uses death registration data for UK children between January 1980 and December 2010.  It looks at key areas such as multiple morbidity, child injuries, birth weight and maternal age to assess the risk factors for child deaths.