Participation restrictions in isolated cervical dystonia: a convergent mixed-methods study.

OBJECTIVE

To describe participation in adults with isolated cervical dystonia and to explore how restrictions are experienced in everyday life.

DESIGN

Convergent mixed-methods study with case- and theme-level integration through joint displays.

SUBJECTS/PATIENTS: Adults with a self-reported specialist diagnosis of cervical dystonia.

METHODS

Respondents completed an online survey including the Utrecht Scale for Evaluation of Rehabilitation-Participation. A purposive subsample completed semi-structured interviews, analysed using reflexive thematic analysis. Quantitative data were summarized with 95% confidence intervals.

RESULTS

108 respondents (73% women; mean age 51.6 [SD 14.1] years; mean disease duration 11.6 [SD 12.8] years) completed the survey. Mean scores indicated low frequency (36.6, 95% CI 34.3-38.8), moderate restrictions (67.6, 64.8-70.3), and low satisfaction (43.3, 40.5-46.1); the productivity domain was the most affected (31.6, 28.7-34.5), with leisure (51.3, 48.4-54.2) and social participation (51.5, 49.4-53.6) less restricted but still constrained. Ten participants were interviewed. Three themes were generated: living with unpredictability; invisibility and contested recognition; and a symptom-focused system in a participation-focused life.

CONCLUSION

Participation was restricted across everyday domains and shaped by fluctuating symptoms, social recognition, and the structure of available care. Patient-reported participation may be a useful complementary outcome alongside impairment-focused assessment.