I was very interested to see the British Paediatric Neurology Association and JLA Priority Setting Partnership Top Ten UK research priorities for interventions in childhood neurological disorders published recently.
My main interest is in tic disorders or Tourette Syndrome(TS) and although it didn’t make the top ten there was some mention of this as referenced by question 16 ‘What are the most effective treatments to manage tic disorders in children and young people?’ Also in the document there were questions which I think apply very well to the Tourette Syndrome community of patients as well as other neurological conditions.
It was great to see recognition of sleep being a problem for many children and young people with neurological conditions. A push forward in terms of effective interventions to support sleep in children with tics and tic disorders would be very helpful. There is some research coming from Michelle Downes at the University College Dublin.
It was good to see that there was a question about how to manage emotional well-being in children and young people with neurological conditions. I think that this applies very much so to children with tics and Tourette Disorder. There is a higher than average rate of depression and anxiety in the TS population. The Tourette Association of America (TAA) found in their impact study that 24% of children have considered suicide at some point in their lives with 10% reporting suicide attempts in the last 12 months
I was interested to read that one of the questions was about medications (e.g. antibiotics and/or immune treatments) and whether they are effective in the management of PANS/PANDAS. (Paediatric Acute-onset Neuropsychiatric Syndrome/Paediatric Acute onset Neuropsychiatric Disorders Associated with Streptococcal infection). Vicky Burford the Chair of Trustees for PAN PANDAS UK was part of this working group.
I was intrigued that there was a question around which are the best non-medicinal interventions (including therapies, orthotics e.g. splints, high and low technology supports) for children and young people with motor disorders. There is little investigation into the pain and musculoskeletal damage caused by tics. The TAA survey also found in their impact study that 72% of children have experienced physical pain because of their tics. I feel sure that other neurological conditions involving pain receive more attention and patients are better served by discussion of control and management of their pain as a recent paper proposed “I'm in pain and I want help”: An online survey investigating the experiences of tic-related pain and use of pain management techniques in people with tics and tic disorders.
So overall it is great to see the British Paediatric Neurology Association and JLA Priority Setting Partnership Top Ten UK research priorities for interventions in childhood neurological disorders. I just feel slightly saddened that tics and tic disorders did not make the top ten. Though the mention of tics will assist in the current push to get NICE guidelines for tics and tic disorders in the UK. Let’s hope that a condition like Tourette Syndrome which includes so many different disciplines like paediatrics can be open to working with the TS community going forward.