Study Title: Feasibility of an Individualized Measure of Disability for Children and Adolescents with Multiple Sclerosis
Study Description: There is little known about children with Multiple Sclerosis (MS) and the areas of daily living which are affected by MS. Specific areas of concern that children with MS have is not known because there is currently no measurement that allows them to report their concerns. We want to know what is important to their quality of life and how children with MS and their families prioritize these concerns. We have developed a measure of disability for children and adolescents with MS and would like to assess the feasibility of this measure, the Pediatric MS Index (PMSI).
The aim of this study is to assess the extent to which the PedsMSI is feasible to use in clinical settings with children and adolescents with MS and parents of children with pediatric MS. All participants will fill up the PedsMSI and will take part in one individual interview. The interview can be conducted face to face at a place convenient to the participant, over the phone or using Skype/FaceTime, depending on the preference of the participants. Each interview is expected to last 30-45 minutes.The research team will not need to consult your medical record to obtain information for this research. Data collected from the interviews will be used to improve the format and structure of the PedsMSI. You will received a $20 gift voucher for participation in the interview.
Recruitment Dates: 2019-02-01 to 2019-12-31
Who can participate: All children aged between 8 to 18 years who has been diagnosed with MS are eligible. All participants have to be influent in either English or French, children who are 12 years and above have the ability to understand simple addition and subtraction of numbers. All parents of children with MS are also eligible.
Location of Trial: McGill University (Quebec)
Contact Information: Nikki Ow
Trial Funding: Montreal Children’s Hospital Foundation