Patient View of Tourette Severity Related More to Functional Impairment Than Tic Noticeability

January 26, 2019

The postgraduate epidemiology fellow at the Centers for Disease Control and Prevention discussed the data and what she and her colleagues found in their analyses of children with Tourette syndrome.

Sara Beth Wolicki, MPH

The existing literature for Tourette syndrome has suggested that the time to diagnosis has been delayed for adolescent patients with the condition, which in turn can lead to challenges in treatment and a clear negative impact on quality of life.

Sarah Beth Wolicki, MPH, a postgraduate epidemiology fellow at the Centers for Disease Control and Prevention (CDC), was part of group that explored the time to diagnosis, quality of life, and severity of disease using patient survey data. What they found was suggestive that there has been a positive trend in time to diagnosis and some insight into disease severity.

To discuss her presentation of the data and what she and her colleagues found in their analyses, Wolicki spoke with NeurologyLive in an interview.

You recently gave a presentation on the complexities of Tourette syndrome. Could you share what you presented?

Sarah Beth Wolicki, MPH: Our analysis was based on parent report. We contacted parents in the National Survey of Children's Health in 2011-2012, and if they answered yes to the question “Has your child ever been diagnosed by a healthcare provider with ADHD or Tourette syndrome,” they were then eligible to be contacted for the follow-up survey, which we did called the National Survey of the Diagnosis and Treatment of ADHD and Tourette Syndrome.

Basically, the idea behind it was to try and focus in on those 2 specific disorders and just get more in-depth information about these children that are being diagnosed with these disorders, their day-to-day experiences, experiences about their diagnosis, and then treatment uses.

What did those surveys uncover about Tourette syndrome?

One of the key findings that we saw was that it's been shown in previous research that there's a delay in diagnosis, specifically for Tourette syndrome, and our study is showing that the time to diagnosis may be improving. We saw that it, on average, was about less than 2 years from a parent initially noticing a tick to being diagnosed by a healthcare provider.

We also asked parents to report on their child's Tourette severity, and from there we compared that with whether they reported functional impairment or whether tics were noticeable to strangers. What we found was that children with more severe Tourette via parent report also reported having functional impairment, whereas there was no difference as far as noticeability from strangers. Mild to moderate versus severe—both reported noticeability. So, severity is really, potentially, speaking more to this the functional impairment rather than just the tics being noticeable.

Then, one of the other findings we looked at was these providers that were diagnosing Tourette. We found about 50% of the providers were specialists, so that could include neurologists, psychiatrists, and developmental and behavioral pediatricians, and then about 30% were diagnosed by general health care providers like a family practice doctor or a general pediatrician. The remaining were diagnosed by a catch-all group, so psychiatrists outside of their school multidisciplinary team or another healthcare provider. But along with that, we asked them how many providers they had to see before receiving their diagnosis, and 50% said 1 to 2 providers before receiving their diagnosis and the remaining 50% said 3 or more providers.

When we look at that collectively, and we see that the time to diagnosis does seem to be improving based off the previous literature and our findings, but we're also reporting that 50% of the children had to see 3 or more providers, which could lead to a lag in diagnosis.

Was there anything surprising in the data?

The severity and its relation to functional impairment, rather than just noticeability of tics. If parents are reporting that their child's Tourette is severe, as a clinician looking at that, it’s realizing that it may not mean that their tics are noticeable. It may be speaking more to impairment that they're having with day-to-day function, and that could be a good way to help provide support and accommodations for these children.

What implications do these data have for clinical practice?

Potentially, in a clinical setting, if you're asking the parents about how severe the tics are, knowing that we're seeing that the parent report is more related to impairment could be a good way for deciding on specific support and accommodations provided for these children and their families.

Are you looking into anything else with this dataset?

We're looking specifically at treatment in the next analyses with the same data set, trying to look at different treatment options as far as behavioral or medication. Also, we’re looking at the adverse effects associated with the medication treatment options that were reported by parents. We're also looking at, using the National Survey of Diagnosis and Treatment of ADHD and Tourette syndrome (NS-DATA for short), children with only ADHD, children with ADHD and Tourette, and children with Tourette only, to try and compare them across impairment and impact, to see what the impact of having both disorders cooccurring is compared to just having 1 of the disorders. Those are the 2 analyses that we're continuing to work on with this data set.

Transcript edited for clarity.

REFERENCE

Wolicki SB, Bitsko RH, Danielson M, Holbrook J, Woods D, Mink J. Children with Tourette's disorder: diagnostic process, co-occurring mental and developmental disorders, and influences on tic severity. J Am Acad Child Psy. 2018;57(10):S199-20