What "tic hassles" do patients care about?

Community Summary of: Patient perspectives on tic-related impairment: A qualitative examination

Authors of the article in the Journal of Neurology Clinical Practice:  Emily Wilton, Brianna CM Wellen, Matthew Capriotti, and Christine A. Conelea

Published online: October 28, 2025

Community summary posted on December 12, 2025

Word count: 507

Reading grade level: 8

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a figure from the published article comparing how many times each theme was endorsed

Why does this matter?
For a long time, doctors and researchers assumed that the main goal for patients with Tourette syndrome (TS) was to have fewer tics. Because of this, most tests only measure "tic severity.”

Tic severity describes how strong and frequent a person's tics are, as well as how much they impact daily life. Doctors use special tools, such as the Yale Global Tic Severity Scale (YGTSS), to figure out how severe tics are. Strong emotions, such as stress or excitement, can often make the symptoms worse. 

However, initial community-engaged work suggests that patients seek tic treatment for reasons beyond reducing symptoms. A lot of previous research has shown that tic severity and impairment aren’t the same things. Patient goals for seeking treatment have never been well studied.

The authors wanted to know what actually bothers people about their tics when they are in treatment. The researchers wanted to listen to patients to understand their "tic hassles"—the specific ways tics get in the way, cause pain, or make life difficult. Understanding more about tic hassles could help doctors and researchers make sure treatments help with the things people care about.

What happened?
The researchers looked at data from 69 participants (ages 8 to 57) who were starting behavioral therapy for tics. Instead of just counting tics, therapists asked an open-ended question: "What are some ways that tics get in the way for you, make life hard, or are bothersome?" The researchers took 254 answers and sorted them into categories (themes) to find common patterns. 

What did the authors learn?
The study discovered that a patient's level of distress did not always match their "tic severity" score. This means a person could have mild tics but feel very stressed, or have severe tics but feel less bothered by them.

The researchers identified six main themes about how tics bother patients:

  1. Social Interference: Tics causing embarrassment or problems with friends and family.
  2. Physical Experiences: Physical sensations, specifically pain.
  3. Task Interference: Tics making it hard to finish schoolwork or jobs.
  4. Activity Restriction: Being unable to do hobbies or sports.
  5. Sleep Interference/Fatigue: Trouble sleeping or feeling exhausted.
  6. Emotional Distress: Feeling sad, anxious, or angry because of tics.

Notably, 67% of participants mentioned physical problems, and half of those specifically talked about pain. 

The study highlights gaps in treatment.

  • Pain can be overlooked: Many patients are in pain from repetitive movements, but current behavioral treatments (like CBIT) do not specifically address pain management.
  • Goals can differ: Patients might want to improve their self-esteem or sleep, but doctors are often focused only on reducing the tics.


What can researchers do next? 
Future studies should:

  • Create better ways to measure patient goals, not just tic counts.
  • Specifically study pain management for people with TS.
  • Look at how "tic hassles" change over time after treatment.
  • Compare the goals of children versus their parents.


How can you find out more?
Read the full article

Please note: University-sanctioned AI tool, Gemini, was used in the preparation of this summary.