To determine caregiver-cited features of dystonia in cerebral palsy (CP) while reviewing standardized clinical videos. 

Dystonia in CP remains underdiagnosed. Limited access to expert clinicians presents a diagnostic barrier. To develop broadly accessible assessment tools, we must consider additional CP experts: caregivers. Caregivers have comprehensive knowledge of their child’s movement repertoires. Clinician and caregiver expertise can be combined to strengthen our understanding of dystonia in CP. 

We employed a rigorous qualitative approach and content analysis. We purposively sampled caregivers of independently ambulatory children age 3-17 years with spastic CP and standardized clinical videos of dystonia assessment maneuvers from a single tertiary care center between 6/20/2023-1/20/2024. Caregivers reviewed their child’s videos describing movements during a recorded semi-structured Zoom interview using an open-ended question guide. The interviewer, a pediatric movement disorders specialist, developed analytic memos of caregiver-cited features specific to dystonia. For preliminary analysis, the salient ideas of these memos were inductively categorized into content themes.

To reach thematic saturation, 27 caregivers were included (children age 4-15 years; 41% GMFCS I, 85% white). Five main content themes emerged (in caregiver voice): 1) Dystonic movements are involuntary (81%, n=22/27), citing a subconscious attempt to balance (78%); 2) Dystonia is triggered by focus (89%), emotion (63%), and touch (59%); 3) Action descriptors included body/limb tensing or tightening (89%), extending (67%), stiffening (63%), coming-in (56%), flexing (52%), or mimicking (44%); 4) Movement quality descriptors included slow (67%), less fluid (26%), or effortful movements (26%); and 5) Caregivers expressed concern for consequences like falling (78%), task difficulty (70%), pain (48%), and orthopedic complications (23%).

Caregiver descriptions expand our understanding of dystonia’s daily impact on independently ambulatory people with spastic CP. Codifying caregiver voices can help create a shared language for dystonia and inform future caregiver-reported assessment tools to increase access to diagnosis for people with CP.