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Mortality risk for children with adrenal insufficiency

Thursday October 28th 2021

Children with adrenal insufficiency have a higher risk of dying than those with other lifelong conditions, new UK research has found.

Scientists at The University of Manchester and Manchester University NHS Foundation Trust carried out a retrospective analysis of medical data of about 300 young people under the age of 25 with adrenal insufficiency.

All were treated at MFT’s Royal Manchester Children’s Hospital (RMCH) and Royal Manchester Infirmary (MRI) between 2006 and 2019.

Writing in the latest Frontiers in Endocrinology, they found during the study period, 13 young people, with a median age of 10, died from causes that were likely to be related to adrenal insufficiency.

This figure is higher than the number of excess deaths in children with Type 1 diabetes and far greater than for children with no chronic health conditions.

The study also revealed a mismatch between reported confidence in administering emergency hydrocortisone injections and the actual administration, which led to the researchers calling for new ways of training parents.

Almost 79% of parents in the study said they were confident about administering intramuscular hydrocortisone but only 20% identified a missed opportunity for injection.

Parents are given extensive advice about increasing hydrocortisone doses when children are unwell to avoid adrenal crisis and are also trained to give emergency steroid injections if the children become seriously unwell.

However, this is rarely used and may only happen many years after they have been trained.

Dr Chris Worth, doctoral researcher at The University of Manchester and clinical research fellow at Royal Manchester Children’s Hospital, said: “Sometimes adrenal crises can happen very quickly and parents understandably call 999 or rush to A&E rather than administer the emergency injection.

“But our study revealed that only two of 17 patients received an emergency injection of hydrocortisone at home before attendance in A&E.

“In children experiencing adrenal crisis, parents followed the guidance given to them in clinic for oral hydrocortisone, but rarely administered intramuscular hydrocortisone.

“This finding is at odds with the 79% of parents who reported confidence in giving the injections. We think local training programmes for management of adrenal crisis are comprehensive, but insufficient to prevent the most serious of cases.”

He added that more immersive learning and practical tools, such as simulation models and virtual reality software, may be needed for parents.

Peter Clayton, professor of child health and paediatrics at The University of Manchester and MFT honorary consultant in paediatrics and paediatric endocrinology, agreed, saying: “Parents are trained to prevent, recognise and react to adrenal crisis but until now there has been little information on what parents are actually doing at home to manage this problem.

“These children often live ordinary lives and most of the time manage their condition well; it’s a terrible tragedy when a death occurs merely because they did not receive the steroid injection they so desperately needed.

“We need to rethink our approach to training – and ask how we can help parents to recognise when to give an injection and also how we help them remember to do this in a time of very high stress.”

Worth C, Vyas A, Banerjee I et al. Acute Illness and Death in Children with Adrenal Insufficiency. Front. Endocrinol 13 October 2021


Tags: Child Health | UK News

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