EFFECT OF DYSTONIA AND BOTULINUM TOXIN TREATMENT ON HEALTH-RELATED QUALITY-OF-LIFE

In view of the steadily rising demand for treatment of dystonia with b otulinum toxin (BT), a relatively expensive neurologic paralytic agent , an exploratory study was undertaken to assess the extent to which dy stonia and BT treatment affect the quality of people's lives. One hund red thirty adults with a current diagnosis of dystonia completed two g eneric measures of health-related quality of life (HRQoL) at regular i ntervals over a minimum of 6 months. One hundred two participants were receiving regular injections of BT; 28 were not taking BT. The HRQoL instruments used were the EuroQol and the Short Form 36 health survey questionnaire (SF-36). Compared with general population samples, study participants reported greater impairment on all EuroQol and SF-36 dim ensions and gave a lower rating to their own health status. Participan ts with nonfocal dystonia had significantly more problems with usual a ctivities than participants with focal dystonia, and a higher number h ad problems with mobility and self-care. The groups reported similar l evels of pain and emotional well-being. Small improvements in HRQoL we re seen after the administration of BT, although few of these were sta tistically significant. The study results offer further psychometric e vidence for the discriminant and construct validity of both the EuroQo l and the SF-36.