Study Title: Development of a Kid-Centered Preference-based Measure of Disability for Children and Adolescents with Multiple Sclerosis: First Steps - Eliciting Domains of Concern from Children and Parents
Study Description: Quantifying disability in pediatric MS has been a challenge. Measurement of disability has relied on the same method used for adults, the Expanded Disability Status Scale. However, the impact of MS differs between adults and children. For children, aspects of life relating to the social environment such as family, school and community are more pertinent. Perception of disability and its impact of MS on the quality of life of children are currently measured by generic pediatric health-related quality of life (HRQL) measures. There is no disease specific HRQL measure for pediatric MS. It is not known what specific areas of concern that children with MS have as there is currently no outcome measure that captures the child's opinion on living with MS. It is evident that children with MS and their parents should play a bigger role in the development of a patient reported outcome measure of disability.

The purpose of this study is to identify the aspects of their lives affected by MS that children and parents identify as important to their quality of life (QoL), and the priority that they would assign to improving these areas of concern. Children with MS and their parents will be asked to answer a web-based survey consisting of four short measures: (i) the Patient Generated Index (PGI), an individualized measure, (ii) EQ-5D Youth version, a health utility index with 5 items, (iii) the KIDSCREEN-27, a 27item HRQL measure, and (iv) the Faces Scale for mood, energy, and pain. The questionnaires will take no more than 15 minutes to complete. The survey is completely anonymous. This study will be used to identify areas of QOL in pediatric MS that are most concerning and those that are prioritized by this sample for improvement. The data will be used to develop the content for a patient-reported outcome measure of MS impact for children with MS.

To participate in the survey, please click on the following link:
Recruitment Dates: 2017-02-20 to 2018-12-1
Who can participate: Children with MS below 18 years of age and parents of children with MS
Location of Trial: Quebec
Contact Information: Research Coordinator: Nikki Ow
Trial Funding: Montreal Children’s Hospital Foundation