Session Information
Date: Thursday, June 8, 2017
Session Title: Dystonia
Session Time: 1:15pm-2:45pm
Location: Exhibit Hall C
Objective: To systematically investigate to what extent motor and non-motor symptoms were related to health-related quality of life (HR-QoL) in children and young adults with dystonia. Secondly, we assessed whether the importance of these symptoms differed between primary (non-lesional) and secondary dystonia patients.
Background: In addition to motor symptoms, there is an increasing interest in the presence and importance of non-motor symptoms in dystonia. However, information on the significance of motor and non-motor symptoms in children and young adults dystonia is still lacking.
Methods: We studied 60 patients aged between 6 and 25 with childhood-onset dystonia. Patients underwent a multidisciplinary assessment of dystonia severity (BFMDRS-M, global clinical impression), motor function (Gross motor function measure, Melbourne assessment of unilateral upper limb function), pain (visual analogue scale), intelligence (Wechsler Intelligence Scale), anxiety and depression (Child/Adult Behavior Checklist) and executive functioning (Behavior Rating Inventory of Executive Function). Measures were analyzed with a principal component analysis and subsequent multiple regression to evaluate which components were associated with HR-QoL (Pediatric Quality of life Inventory).
Results: Patients (29 primary, 31 secondary) had a mean age of 13.6±5.9 years and a mean disease duration of 9.6±5.1 years. The principal component analysis revealed three components: 1) motor symptoms; 2) anxiety, depression and executive functioning; and 3) pain. A lower HR-QoL was associated with more impairments in motor symptoms and problems in anxiety, depression and executive functioning (R2=0.75). Within the secondary dystonia subgroup similar results were found (R2=0.84). In primary dystonia patients, only problems in anxiety, depression and executive functioning were significantly correlated with a lower HR-QoL.
Conclusions: Non-motor symptoms are at least as important as motor symptoms for the HR-QoL in young patients with dystonia. We plead for a multidisciplinary assessment of motor and non-motor symptoms to optimize management and improve the HR-QoL.
To cite this abstract in AMA style:
H. Eggink, M. Coenen, A. Elema, W. Veenstra, K. Peall, D. Sival, M. Tijssen. Determinants of health-related quality of life in children and young adults with dystonia [abstract]. Mov Disord. 2017; 32 (suppl 2). https://www.mdsabstracts.org/abstract/determinants-of-health-related-quality-of-life-in-children-and-young-adults-with-dystonia/. Accessed May 19, 2025.« Back to 2017 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/determinants-of-health-related-quality-of-life-in-children-and-young-adults-with-dystonia/