The following article is part of conference coverage from the 8th Joint American Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) and European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) MSVirtual2020 event. Neurology Advisor‘s staff will be reporting breaking news associated with research conducted by leading experts in neurology. .


For youths with pediatric multiple sclerosis (MS), activities and participation are more important life domains than disease-related impairments. As a result,

a health-related quality of life (HRQoL) measure should include variables of MS-related impairments that require targeted therapies, as well as the activities and roles important to these patients, according to study results presented at the 8th Joint American Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) and European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) MSVirtual2020 event, held September 11-13, 2020.

While generic HRQoL measures are used to evaluate the impact of pediatric MS, these measures do not always provide insight into domains of health that are relevant to children and parents alike. The goals of this study were to identify domains of life significant to youths with pediatric MS and to contribute to building a better condition-specific measure for this population.


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To achieve these, study researchers used an online survey based on the Patient Generated Index (PGI), an approach which relies on open-ended responses to assess HRQoL. They then mapped text threads formed by the PGI onto the International Classification of Functioning, Disability and Health (ICF), and the Comprehensive ICF Core Set for MS.

 A total of 19 participants completed the survey, 10 of whom were youths with MS between the ages of 14 and 22 years. This group had a median onset age of 13.5 years. More than 80% of the areas in the survey nominated by youths with MS were associated with activities and participation, while just 20% of these areas related to impairments. 62% of the areas nominated by parents, however, related to impairments. Taken together, these findings suggest that a HRQoL measure should include variables of MS-related impairments that require targeted therapies as well as activities and roles important to youths.

The researchers noted that the new assessment approach has a disability component which addresses such impairments related to MS, and is completed with the PGI system. In this component, the youth or parent chooses a total of 5 disability areas impacted by MS, rates its severity, and prioritizes each area for improvement. Additionally, the assessment has a youth-completed quality of life component that asks respondents about areas going well.

Study researchers concluded that “the use of this new measurement approach could prove useful in overcoming challenges of measurement development for children with rare diseases” like pediatric MS.

Visit Neurology Advisor‘s conference section for continuous coverage from the ACTRIMS/ECTRIMS MSVirtual2020 Forum.


Reference

Ow N, Karp A, Ogeil J, Dilenge M, Sébire G, Mayo N. Pediatric MS: different disease course, different impact, different measurement approach needed. Presented at: 8th Joint American Committee for Treatment and Research in Multiple Sclerosis and European Committee for Treatment and Research in Multiple Sclerosis MSVirtual2020 event; September 11-13, 2020. Abstract P0130.