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When research raises uncomfortable issues for TS and chronic tic disorder

Posted on 1 March 2020


Recently there have been social media posts about a Tourettes Action funded research project which took place at the Karolinska Institute in Sweden called ‘Suicide in Tourette’s and Chronic Tic Disorders’ – you can read a summary of the paper here.


Tourettes Action believes that although suicide is a sensitive subject, it is one which needs to be talked about. We understand that this is a difficult topic and not one which parents or people with TS like to think about. However, we strongly believe that for research to be effective we need to talk about the results. By highlighting this to people in the TS community it means that we can help support people with TS and their families. By being aware of issues like this seeking help should be easier and awareness increased. We want to empower parents of children with TS and adult TS patients so they are better equipped should a situation arise where someone is so distressed they might consider harming themselves.


There is another reason that research like this needs to be brought to the attention of not just the public but also schools and other agencies, such as funders, health professionals and policy makers. It is important that these people also understand the ramifications of having TS so that they can help us fund and support the treatment and management of TS. We need to educate the health professionals coming into contact with people with TS so that they are equipped with this knowledge so that they are aware of the increased risks and can act accordingly.

The reported findings from this research showed, in this sample of people, that having Tourette Syndrome or Chronic Tic Disorder were associated with substantial risk of suicide. The figure from the research was that people with TD/CTD were four times more likely to commit suicide. The researchers point out that ‘suicidal behaviour should be monitored in these patients, particularly in those with persistent tics, history of suicide attempts, and psychiatric comorbidities. Preventive and intervention strategies aimed to reduce the suicidal risk in this group are warranted.’


Seonaid Anderson, Research Manager at Tourettes Action, asked Lorena Fernandez De La Cruz, who was the lead researcher on this project to ask what she thought of the feedback from some patients who found the findings very worrying and perhaps even unhelpful?


Lorena replied:

“In this study, we used the Swedish national registers to identify all the individuals that had been diagnosed with TS or chronic tic disorder in the country during a period of more than 40 years, which amounted to almost 8,000 cases. These individuals were compared to a group of individuals from the general population without a diagnosis of TS or chronic tic disorder. The results did show that deaths by suicide were 4 times more likely in those diagnosed with tic disorders than in those without tics.


I understand that these results can be upsetting for those suffering from TS and their loved ones. However, a closer look at the reported figures will also show us that the absolute risk (proportion) of death by suicide was small. In our study, only 32 out of 7,736 cases of TS had died by suicide during a period of 44 years, which is a proportion of 0.4%. In the individuals without tics, the proportion of deaths by suicide during the same period was 0.1%. Hence, the 4-fold increased risk in the tic disorders cohort, compared to the general population. In any case, I believe that patients with tic disorders and their relatives should be aware that the risk of suicide is not zero.” 


Tourettes Action not only needs to put the valuable research findings out there for people to be aware of, we also need to involve parents and patients  even when the information may not be palatable but can be vital in improving the lives of people living with TS.  We feel we owe it to the TS community to talk about such issues and help provide support and understanding.


If you are feeling depressed, you should visit your doctor or clinician to discuss how they can help you. You can also read about the condition on the NHS website, Young Minds website, or the Samaritans.


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