“I just knew there was something wrong, but no one would believe me. It was a shock, but in some ways a relief, when we finally found out he has cerebral palsy…”
“Our physical therapist picked it up but the doctors would not confirm it. We wasted so much time when she could have been receiving intensive treatment.”
Parents of children diagnosed with cerebral palsy
Professor Iona Novak and Dr Cathy Morgan, from Australia’s Cerebral Palsy Alliance, have joined doctors and researchers from across the world to create the first ever clinical practice guidelines on early intervention and diagnosis of infants who are either have cerebral palsy (CP) or are at high risk of it.
With CP affecting 1 in 500 births, it is hard to believe that a definitive global source of information is yet to be developed; one that provides guidelines for the diagnosis and treatment of CP.
In addition to helping professionals across the world identify an infant’s CP as early as possible, these guidelines could also help provide better outcomes for babies whose condition is detected early.
At an international summit in 2014, 40 early intervention experts unanimously agreed on the need to create holistic worldwide guidelines.
Clinical practice guidelines are a known effective tool for closing the research-practice gap and lay out a very clear set of recommendations. Guidelines that are clear, concise, tell you what to do, who to do it with and how much to do, have a proven 67% uptake and can completely change practice.
Dr Morgan said the infant guidelines include 12 recommendations for early detection of CP for children under 5 months of age, who can have General Movement’s Assessment, and also recommendations for children over that age who aren’t able to have those assessments.
“These recommendations are based on the best available evidence. We want to be able to get them out to people worldwide so that we can collectively reduce the time it takes to diagnose”, Dr Morgan said.
“Currently, we know that sometimes we don’t always have the information we need to diagnose babies early enough. We need clinicians to be able to identify a baby as ‘high risk’ (in terms of diagnostic category) but still be able to send those babies off for intervention.”
“Out of all the ‘at risk’ babies we want to find those that are at risk of CP in particular, because they need targeted intervention and monitoring to prevent secondary problems from occurring.”
“This is ground-breaking. For the first time, we’re putting it out there that we think we should be identifying these children earlier”, she said.
Dr Morgan said improvements in neuroimaging and the introduction of sensitive infant assessment tools now supports accurate and early detection of CP.
Recent neuroscience research supports intensive, repetitive, task-specific early intervention for CP that should commence very early while the brain is most plastic. This makes early detection essential for children with CP and their families.
The guidelines are currently awaiting publication. The panel is also writing guidelines on what is best practice early intervention for infants.
With worldwide collaboration and education on best practice, together the future looks very bright for changing the outcome for babies with CP everywhere.
View the article abstract: Novak I, Morgan C, Adde L, Blackman J, Boyd RN, Brunstrom-Hernandez J, Cioni G, Damiano D, Darrah J, Eliasson A, de Vries LS, Einspieler C, Fahey M, Fehlings D, Ferriero DM, Fetters L, Fiori S, Forssberg H, Gordon AM, Greaves S, Guzzetta A, Hadders-Algra M, Harbourne R, Kakooza-Mwesige A, Karlsson P, Krumlinde-Sundholm L, Latal B, Loughran-Fowlds A, Maitre N, McIntyre S, Noritz G, Pennington L, Romeo DM, Shepherd R, Spittle AJ, Thornton M, Valentine J, Walker K, White R, Badawi N. Early, Accurate Diagnosis and Early Intervention in Cerebral Palsy: Advances in Diagnosis and Treatment. JAMA Pediatr. Published online July 17, 2017. doi:10.1001/jamapediatrics.2017.1689
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