Work to bring forward cerebral palsy diagnoses in
babies has had a boost with $400K funding for referral hubs
and research.
A pair of researchers have led
a successful bid to trial regional hubs for diagnosing
cerebral palsy in babies.
One in 500 babies is born
with cerebral palsy yet, in Aotearoa New Zealand, children
are not diagnosed until they are an average of 19 months
old, something the University of Auckland researchers want
to change.
Doctors have traditionally taken a
“wait-and-see” approach to cerebral palsy, but that
means children may miss out on treatment during a period of
peak neuroplasticity, say Dr Sian Williams of the Liggins
Institute and Professor Sue Stott of the Faculty of Medical
and Health Sciences.
“Doctors may have suspicions,
but not want to give bad news. That’s been a huge barrier
and gives the impression that there’s nothing to be done
early,” Professor Stott says.
However, families say
they want to know as soon as possible and shouldn’t have
to fight for a diagnosis, according to Stott and Williams’
research.
Further, earlier diagnosis and treatment
could lead reduced impairments and improved ability and
independence for people with cerebral palsy.
Around 60
percent of the 57 families who participated in a 2021 study
expressed concerns about their child before six months of
age, but only 21 percent were provided with a
diagnosis.
Eighteen percent of the families
experienced a delay in diagnosis of more than a year [J Clin
Med 2021;10(7):1398].
“New Zealand families
seek provision of early, honest and ongoing communication
with their healthcare professionals about their child,”
Williams says. “In addition, families experience
challenges relating to a lack of post-diagnosis support,
such as counselling and guidance that might help them
navigate the health system.”
There are three
reliable diagnostic tools that, along with the child’s
history, can accurately detect, or identify high risk of,
cerebral palsy in babies as young as three months
old.
The tools are MRI, general movements assessment
(GMs) and the Hammersmith Infant Neurological Examination
(HINE).
Yet, while doctors have a high awareness of
these tools, only MRIs are routinely employed, perhaps
because of a lack of training, time, or clear guidance on
when to use the tools, Stott and Williams say.
In a
new paper, Stott and Williams show that neuroimaging is
commonly used with very preterm and term babies, but not
with moderate-to-late-preterm babies. In addition,
neuroimaging didn’t always detect cerebral palsy in babies
that were later found to have the condition, suggesting
other tools, such as GMs and HINE should be used more
routinely (J Clin
Med 2022;11(7):1866).
The HINE takes around 10
to 15 minutes to assess the child’s movements, posture and
muscle tone, while the GMs involves a three-minute video
taken of the baby while awake and calm, which is later
reviewed to determine the quality of their movements. Best
practice guidelines were recently
published.
Williams and Stott are now working with
clinicians based at Starship Children’s Health and around
the country to translate research into everyday
practice.
They have successfully bid for $200k funding
from the CP Alliance Research Foundation (Australia) to
support a pilot of an ‘early diagnosis hub’ for cerebral
palsy in the Wellington region and a further $200k for
research.
If the trial is successful, the goal is for
these hubs to be established around New Zealand.
This
would mean doctors could refer families into these
specialised services, which in turn could support local
services with advice on how best to provide early care for
babies with cerebral palsy.
“Ideally, every baby
would be assessed in their local centre, but we know that is
not realistic to start with, and training is needed to use
the diagnostic tools,” Stott says.
While many early
interventions are showing promise from research overseas,
New Zealand hasn’t had enough very young babies diagnosed
to enter large clinical trials. The first step is to improve
diagnosis, so that New Zealand children can also participate
in the research.
Nonetheless, Williams and Stott have
recently published a paper showing the changes in skeletal
muscle in people with cerebral palsy and the effects of
common treatments targeted at improving muscle function (BMC
Musculoskelet Disord 2022;23:233).
“It is
thought that, if targeted interventions can be introduced
earlier, we might be able to change the way a child with
cerebral palsy’s muscles develop,” Williams
says.
There have already been great gains in
prevention of cerebral palsy and, with those, a lessening of
disability.
This pair, and the clinicians and
researchers they collaborate with, hope to further improve
the abilities of children with cerebral palsy and improve
education and support for their
families.
© Scoop Media
Discussion about this post