18 What information is provided to patients with tourette syndrome?

Abstract

<h3>Objective</h3> Information about medical disorders should be provided to patients in a standardised way in order to ensure that key information about their conditions is appropriately conveyed. This is particularly relevant for neuropsychiatric disorders for which misconceptions are widespread, such as Tourette syndrome. We set out to identify and critically appraise the most commonly used Patient Information Leaflets (PILs) about Tourette syndrome worldwide. <h3>Method</h3> A computerised search was carried out using the web search engine Google, which ranks web pages by relevance using the PageRank algorithm. The search terms “Tourette*” AND “leaflet” OR “fact sheet” OR “information sheet” were used to identify PILs developed by a named source in English language with the purpose to provide an overview of Tourette syndrome. The contents of the PILs were subsequently screened for inclusion of the eight key facts identified by Tourettes Action-UK as the gold standard of essential information about Tourette syndrome to be communicated to patients. Each PIL was given a quality score from 0 to 1 for each key fact (total score 0–8): 0 points if the fact was not addressed, 0.5 points if the fact was partially addressed, and 1 point if the fact was fully addressed. <h3>Results</h3> A total of 18 PILs were identified, with quality scores ranging from 4 to 6.5. There were considerable discrepancies in the amount and accuracy of information provided by each PIL. The key facts about the range of severity of Tourette syndrome and the presence of co-morbidities such as ADHD and OCD were adequately covered by all PILs. Key information about the definition of Tourette syndrome and the existence of dedicated charities/support groups was present in 14/18 PILs. (78%) The majority of PILs (13/18; 72%) clearly stated that involuntary swearing as a tic (coprolalia) is present only in a subset of patients with Tourette syndrome. Four PILs (22%) mentioned pharmacological options outside neuroleptics, such as clonidine, and only one PIL (6%) covered behavioural, pharmacological and surgical treatment options. Finally, the recommendation of referring patients with Tourette syndrome to a specialist in neuropsychiatry was not explicitly mentioned in any of the PILs. <h3>Conclusions</h3> There is a wide selection of PILs available on Tourette syndrome, however the information provided in these PILs vary considerably in quality and comprehensiveness. Inclusion of key facts on Tourette syndrome would improve the delivery of care for this clinical population by ensuring that patients have access to more accurate, consistent and useful information.