New research led by Perth-based The Kids Research Institute Australia has provided insight into the burden of Tourette syndrome and other tic-related disorders.
The national Impact for Tourette’s survey, compiled in conjunction with the UNSW Sydney, found one in two children with a tic-related disorder have thought about ending their life, while one in 10 affected children and one in four adults have attempted suicide.
It found bullying, discrimination, lack of understanding and the exhaustion of living with such chronic neurological disorders – characterised by involuntary, repetitive movement and vocalisations – were among the factors that drove many of those affected to despair.
The report listed seven key recommendations, with the top recommendation being that Government funding be provided to develop a National Clinical Guideline for the diagnosis and treatment of tic disorders.
It is envisioned that such a guideline would be for the use of clinical and allied health professionals and to provide awareness and guidance to consumers and the community.
Co-lead author of the report Dr Melissa Licari, senior research fellow at The Kids Research Institute Australia, said based on the survey’s findings it would be fair to say that negative experiences in accessing services contribute to poor mental health outcomes in patients with Tourette syndrome and other tic disorders.
She added that the report provided insights that should inform doctors in their support and interactions with those with tic-related conditions.
An estimated 50,000 Australian children and adults have a lifelong tic-related condition, most commonly Tourette syndrome, yet many struggle to obtain an accurate diagnosis or appropriate support.
The report captured the experiences of more than 200 individuals and caregivers across Australia, including their efforts to obtain a diagnosis and treatment; functional challenges; impact on mental health; obstacles faced in education and employment; and the emotional and social struggles experienced by individuals.
Dr Licari said early referral and education were key to better supporting those with tic related conditions.
“One in four respondents reported they had waited more than two years to receive a diagnosis, with some waiting up to four years, while a third of those who did receive a diagnosis received no recommendations for services or interventions, she said.
“Given the unpredictable nature of tics, GPs should refer patients early to specialists for timely care. Providing educational resources about tic disorders and strategies helps families understand and manage the condition more effectively.”
Dr Licari said it was important there was an understanding of the essential interventions that could be provided by psychologists.
“Psychologists trained in tic disorders can offer first-line interventions, such as Comprehensive Behavioral Intervention for Tics, which is specifically designed to manage tics.
“They can also help address co-occurring conditions like OCD, anxiety, and depression, which often affect patients with tic disorders.”
The extent to which tic disorders could reduce functioning requiring lifelong support also needed to be recognized, she added.
“In some cases, tic disorders can significantly impact daily functioning, including in social, academic, or work settings.
“These individuals often require long-term, comprehensive support to manage the broader effects of the disorder.”
The report also highlighted some of the negative experiences patients had been subject to when seeking support.
“Many respondents reported feeling dismissed or invalidated by healthcare professionals, leading to frustration, confusion, and increased anxiety,” Dr Licari said.
One of the biggest challenges reported was getting GPs to believe they had symptoms warranting the need for specialist referral.
Dr Licari said when GPs or other general healthcare providers did not recognise the seriousness of tic disorders, patients would inevitably face delays in receiving proper care, which could exacerbate stress and worsen mental health outcomes.
“I remember when all my tics started. The GP told me to just try and be calm…that my tics were just anxiety and to listen to music, be calm, and do meditation,” one respondent to the survey said.
Similarly, a caregiver shared: “The medical professionals said he was ‘just putting it on’ and didn’t acknowledge the video evidence and said, ‘oh but he’s not doing any of that now’.”
As the first point of contact, GPs are in a key position to recognise the signs of tic disorders early, Dr Licari said.
“GPs can also ensure timely referrals to specialists, ensuring patients access appropriate care without unnecessary delays,” she said.
“By providing a clear pathway and guidance from the outset, GPs can help reduce stress and uncertainty, fostering a sense of support and understanding as patients and their families navigate the condition.”
Additional recommendations specific to interventions were highlighted in the report.
One of these was the need for enhanced knowledge of tic disorders among medical and allied health professionals to provide better information and support on available treatment and therapies, effectiveness, and side effects.
Another called for stronger collaboration among healthcare professionals and the establishment of more tic clinics to promote cooperation across specialties.
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