Children's doctor warns 'net literate' parents of dangers

A paediatrician based at Southampton's university hospitals has warned "net literate" parents need to be aware of the dangers of taking online advice.

Consultant paediatric gastroenterologist Dr Nadeem Afzal said while the trend for accessing health information on the internet should be "embraced", there was a risk if parents self-diagnosed without seeking professional advice.

Dr Afzal spoke out after new research into parental knowledge of the autoimmune bowel disease coeliac and its treatments before their children are investigated for the condition.

Coeliac disease is caused by intolerance to the protein gluten and leads to damage of the lining of the small intestine, but symptoms and the disease can be fully controlled with a strict gluten-free diet.

If left undiagnosed or untreated, coeliac can cause a range of long-term complications, primarily affecting children’s growth and pubertal development in the first instance.

Dr Afzal and his colleagues found more than three quarters of parents (80%) accessed the internet for information on coeliac disease and were aware of it, but less than half correctly identified all gluten-containing foods.

Children and families presenting with suspected coeliac disease were recruited at the time of initial tests and parents were asked questions about the condition prior to seeing a dietitian.

Nearly half of parents (45%) wrongly thought that maize contained gluten, whereas 98% correctly identified that gluten was in wheat. Overall, only 38% of parents correctly identified all gluten-containing foods.

“Our study shows that although parents identified a gluten-free diet as treatment for coeliac disease, they made mistakes in identifying what foods constituted gluten,” said Dr Afzal, based at Southampton General Hospital.

“But I do think parents making use of the internet is a very positive move and it reflects the age in which we live – we should embrace new technology as a useful starting point.”

While he encourages the parents of his patients to surf the web before seeing him in clinic, Dr Afzal says the resource can contain “quackery” and parents should be aware of the complications of self-diagnosing.

“In my personal practice, I encourage parents to score the internet before meeting me in the clinic. I find parents of 2010 very net literate and 'Googling’ readily anyway,” he said, “but we know there is a lot of quackery and unscrupulous information around.

“Parents who start treating their child with a gluten-free diet independently make it much trickier for us. Coeliac can only be diagnosed when children are on a gluten-containing diet.

“In such cases, we can end up re-challenging and delaying the diagnosis by several months. Once a diagnosis is made, correct treatment and education about it becomes crucial in getting the child back to 100%.”

He added: “One-to-one education gives a personal touch and enables us to answer parental questions directly which they wouldn’t necessarily be able to find out from a website and, despite more than two-thirds of parents using the internet as their source of information at the time of diagnosis, knowledge of specific gluten-containing foods was inadequate.”

But Dr Afzal does believe doctors have an opportunity to modernise and adopt the web as a positive addition to their consultative skills.

“We have a unique opportunity to incorporate the advantages of the internet into our consultations but must tame the beast by explaining to parents which authentic websites they should visit to aide their understanding of coeliac, rather than let them search autonomously and be fed dubious content.”

The paper, Study on Phenotype and Parental Information of Children Investigated for Coeliac Disease at Endoscopy, was presented at the European Society of Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) conference in Istanbul earlier this month.

Posted on Thursday 24 June 2010