Impact of Tourette syndrome and other tic-related disorders highlighted

By Melanie Hinze

New Australian research reveals that one in two children with a tic-related disorder has thought about ending their life. Furthermore, one in 10 children and one in four adults with such a disorder have attempted suicide, five times the national average.

NHMRC Senior Research Leadership Fellow and Scientia Professor & Chair of Child Psychiatry at UNSW Sydney and South West Sydney Health, Professor Valsamma Eapen, told Medicine Today that more than 50,000 people in Australia were living with Tourette syndrome and other tic disorders. These conditions were often overlooked and inadequately supported, leading to poor mental health and quality of life, she noted.

The research, led by The Kids Research Institute Australia and UNSW Sydney, found that bullying, discrimination, lack of understanding and the exhaustion of living with Tourette syndrome or other tic-related disorders were among the factors that drove many of those affected to despair.

‘The research found that 80% of people experience tics daily, 70% report a moderate to extreme impact on their daily activities, more than half regularly sustain injuries, and 80% of children and 60% of adults have poor health-related quality of life,’ Professor Eapen, who was one of the research leaders, told Medicine Today.

Furthermore, ‘60% of people reported experiencing moderate to extreme stigma, over 90% have faced unfair judgement by others and more than half have  been verbally abused by strangers and fear for their safety in public.’

Of significance for clinicians, Professor Eapen said there was limited access to healthcare services and treatment, with one in four children and one in two adolescents waiting over two years after seeking help, and only one-third reporting a positive experience while obtaining a diagnosis.

‘The survey found that often it was the individual or the parent who had to advocate to go to the doctor with the (DSM) criteria and information about Tourette’s in order to get a diagnosis,’ Professor Eapen said.

She pointed out that not only was it common for people with Tourette’s to have other comorbidities such as attention deficit hyperactivity disorder, obsessive compulsive disorder or behaviours, or anxiety, but also how integral these were to each other.

In addition, one in three of those significantly impacted and unable to attend to daily living activities as adults had had their National Disability Insurance Scheme application rejected due to misconceptions that ‘tics get better’ and it was not a permanent impairment.

One in three affected people experienced depression, about 70% struggled with anxiety disorders and nearly 80% of caregivers also faced mental health issues, she said.

Professor Eapen said the research found that there needs to be better awareness, access to more standardised diagnosis and evidence-based care across the country, increased consistency of treatment plans and enhanced training for medical practitioners and psychologists.

‘A national clinical guideline for the diagnosis and treatment of Tourette’s and tic-related disorders is critically needed,’ she added.

The report, National Survey Evaluating the Impact of Tourette’s Syndrome and Tic Disorders in Australia, is available at https://www.thekids.org.au/impactfortourettes.