Abstract
BACKGROUND AND OBJECTIVES: Dystonia is the third most common movement disorder. Motor and non-motor manifestations of dystonia may impact Health Related Quality of Life (HRQoL), with lower HRQoL scores compared to the healthy population. People with generalized dystonia report worse HRQoL scores (vs. people with focal distributions). Social determinants of health (SDOH) may play a role in HRQoL outcomes in dystonia, but scant data exists. We aimed to examine differences in HRQoL scores in people with focal vs. non-focal (e.g., segmental, multifocal, generalized) dystonia and the association with SDOH. METHODS: 129 participants with isolated dystonia, who were recruited through Mass General Brigham movement disorders clinic and enrolled in the Dystonia Partners Research Bank, completed a follow-up survey on SDOH and HRQoL: Quality of Life in Neurological Disorders Version 2.0 Short Form (Neuro- QoL-SF) and the EuroGroup 5-level (Euro-QoL). Linear regression analyses were performed. RESULTS: Participants with isolated dystonia were predominantly female (72.1%), non-Hispanic white (79.8%), and highly educated (79.8%; ≥ bachelor's degree). 71.3% of the participants had focal dystonia and 28.7% of the participants had non-focal dystonia. Participants with focal dystonia (vs. non-focal dystonia) reported older age at diagnosis (49.2 ± 11.7 vs. 40.6 ± 19.2, p = 0.004). Participants with focal dystonia (vs. non-focal dystonia) reported higher (i.e., better) overall health scores (80.4 ± 13.9 vs. 72.8 ± 13.5, p = 0.005), higher ability to participate in social activities (51.3 ± 7.7 vs. 47.2 ± 6.0, p = 0.003), lower fatigue (44.7 ± 8.4 vs. 49.8 ± 7.2, p = 0.001), and lower sleep disturbance (48.0 ± 8.2 vs. 53.0 ± 7.9, p = 0.002). Independent predictors of higher overall health ratings included focal distribution of dystonia (b = 7.5; p = 0.01), a higher level of education (b = 9.2; p = 0.04) and not having a mental health diagnosis (b = 7.5; p = 0.01). CONCLUSION: Participants with focal dystonia were diagnosed later and had higher (i.e., better) HRQoL measures vs. participants with non-focal dystonia. Predictors of better HRQoL were having focal dystonia and higher level of education, whereas the presence of a mental health diagnosis was associated with lower HRQoL (i.e., worse) scores. SDOH such as employment status, medical literacy, and ability to afford basic needs may influence HRQoL ratings for participants with isolated dystonia. Our findings may not be generalizable to the general population of patients with isolated dystonia. We highlight areas for further research and development.