The spasticity-related quality of life 6-dimensions instrument in upper-limb spasticity: Part I Development and responsiveness

Abstract

Objective: To describe the development of the Spasticity-related Quality of Life 6-Dimensions instrument (SQoL-6D) and its sensitivity to clinical change (responsiveness). Design: Multicentre, prospective, longitudinal cohort study at 8 UK sites (NCT03442660). Patients: Adults (n = 104) undergoing focal treatment of upper limb spasticity. Methods: No condition-specific health-related quality of life tool is available for upper-limb spasticity of any aetiology. The SQoL-6D was developed to fulfil this need, designed to complement the Upper Limb Spasticity Index (which incorporates the Goal Attainment Scaling evaluation of upper limb spasticity [GASeous] tool) with targeted standardised measures. The 6 dimensions of the SQoL-6D (score range 0–4) map onto common treatment goal areas identified in upper-limb spasticity studies. A Total score (0–100) provides overall spasticity-related health status. To assess responsiveness, the SQoL-6D, Global Assessment of Benefit scale and ”GASeous” were administered at enrolment and 8 weeks. Results: Significant differences in mean SQoL-6D Total score change and effect sizes across patients rating ”some benefit” (0.51) and ”great benefit” (0.88) supported responsiveness. Conclusion: The SQoL-6D is a promising new measure of health status in upper limb spasticity, that enables systematic assessment of the impact of this condition in relation to patients’ priority treatment goals. A psychometric evaluation of SQoL-6D is presented separately. LAY ABSTRACT Upper-limb spasticity is a condition in which muscles become ”tight”, restricting use of the arm and hand. Questionnaires have been developed to assess a person’s quality of life, but are not specifically designed to assess the impact of spasticity on a person. The Spasticity-related Quality of Life 6-Dimensions instrument (SQoL-6D) was created to address this deficiency. The development of the SQoL-6D is described here, along with analysis of its responsiveness to ensure that the SQoL-6D detects changes in spasticity symptoms following treatment (as reported by patients using other questionnaires). These analyses showed that the SQoL-6D captured changes in the burden of spasticity for people with this problem. Other technical psychometric properties of the SQoL-6D are reported in the companion paper available in this issue

Keywords

• quality of life
• muscle spasticity
• botulinum toxin
• rehabilitation
• surveys and questionnaires
• health status