Participation restrictions in isolated cervical dystonia: a convergent mixed-methods study
DOI:
https://doi.org/10.2340/jrm.v58.46205Keywords:
International Classification of Functioning Disability and Health, Rehabilitation, TorticollisAbstract
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.
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