Survival of children and adolescents with intellectual disability following gastrostomy insertion.
Feeding tubes still shorten life for kids with severe ID, but earlier placement and modern care are steadily improving survival odds.
01Research in Context
What this study did
The team looked at kids with severe intellectual disability who had a feeding tube placed.
They compared how long these kids lived against similar kids who kept eating by mouth.
Records came from hospitals and clinics across several years.
What they found
Children with the tube still died sooner than matched peers.
Yet survival has improved for each newer birth group.
Placing the tube earlier helped the highest-risk kids live longer.
How this fits with other research
Rojahn et al. (1994) warned that gut blockages kill quickly in people with ID and often show no pain or vomiting. Payne et al. (2020) now show that better tube and breathing care is cutting deaths, so the bleak 1994 picture is easing.
Carter et al. (1988) taught two tube-fed infants to swallow and lose the tube. Their small wins sit beside K et al.’s big-data view: tubes remain risky, but early placement plus rehab can still give a child a shot at oral feeding later.
Shepherd et al. (2021) found that adults with both autism and ID carry heavy GI illness loads. K et al. trace that burden back to childhood, showing how early tube decisions echo into later medical profiles.
Why it matters
When you serve a child who may need a gastrostomy, push for early evaluation and full respiratory work-up. Track constipation daily—silent obstruction still happens. Share the survival trend with families so they can weigh benefits and risks without outdated fear.
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02At a glance
03Original abstract
BACKGROUND: Positive health outcomes have been observed following gastrostomy insertion in children with intellectual disability, which is being increasingly used at younger ages to improve nutritional intake. This study investigated the effect of gastrostomy insertion on survival of children with severe intellectual disability. METHODS: We used linked disability and health data of children and adolescents who were born in Western Australia between 1983 and 2009 to compare survival of individuals with severe intellectual disability by exposure to gastrostomy status. For those born in 2000-2009, we employed propensity score matching to adjust for confounding by indication. Effect of gastrostomy insertion on survival was compared by pertinent health and sociodemographic risk factors. RESULTS: Compared with children born in the 1980s-1990s, probability of survival following first gastrostomy insertion for those born in 2000-2009 was higher (2 years: 94% vs. 83%). Mortality risk was higher in cases than that in their matched controls (hazard ratio 2.9, 95% confidence interval 1.1, 7.3). The relative risk of mortality (gastrostomy vs. non-gastrostomy) may have differed by sex, birthweight and time at first gastrostomy insertion. Respiratory conditions were a common immediate or underlying cause of death among all children, particularly among those undergoing gastrostomy insertion. CONCLUSIONS: Whilst gastrostomy insertion was associated with lower survival rates than children without gastrostomy, survival improved with time, and gastrostomy afforded some protection for the more vulnerable groups, and earlier use appears beneficial to survival. Specific clinical data that may be used to prioritise the need for gastrostomy insertion may be responsible for the survival differences observed.
Journal of intellectual disability research : JIDR, 2020 · doi:10.1111/jir.12729