Participation as an Outcome in Multiple Sclerosis Falls-Prevention Research

Abstract

Selecting the outcomes for an intervention trial is a key decision that influences many other aspects of the study design. One of the major tasks during the 3-day inaugural meeting of the International MS Falls Prevention Research Network was to identify the key outcomes for the falls-prevention intervention that was being designed by the Network members for testing across their multiple sites. Through a nominal group process, meeting participants described how engagement in important, meaningful everyday activities, beyond traditional basic and instrumental activities of daily living, should be a long-term outcome of a successful falls-prevention intervention for people with MS. Post-meeting work, which involved literature reviews and comparisons of definitions of major constructs identified during the meeting discussions, led to the consensus recommendation of including participation as a long-term outcome in MS falls-prevention interventions. Participation reflects involvement in a life situation. This article explains the rationale for this recommendation and presents four measures that have the potential for use in tracking long-term participation outcomes in MS falls-prevention research. Int J MS Care. 2014;16:171-177.

Perceptions of Participants in a Group, Community, Exercise Programme for People with Multiple Sclerosis

“…This highlights the positive addition of a qualitative analysis which found effects not captured by standardised outcome measures at participation level. The addition of participation measures to rehabilitation interventions in MS [ 40 ] warrants consideration in future studies.…”

Online Delivery of the Individualized Reduction of Falls Intervention for Persons With Multiple Sclerosis Who Use a Wheelchair or Scooter Full-time: A Pilot Study

“…An improvement in community participation and QOL was not observed in this study, and these areas may require a longer observation period to be fully examined. Consistent with the recommendations of the International MS Falls Prevention Network, 22 community participation is a key component of the iROLL-O program. All components of iROLL-O tie back to the influence on community participation and QOL.…”

Optimizing detection and prediction of cognitive function in multiple sclerosis with ambulatory cognitive tests: Protocol for the longitudinal observational “CogDetect-MS” study (Preprint)

“…working memory [6], and/or executive functioning [7]. Cognitive dysfunction in MS exerts a dire impact on many aspects of health-related quality of life, including employment, independent living, social participation, and physical functioning [8][9][10] and has been linked to poor treatment adherence [11]. Unfortunately, progress in developing preventative, compensatory and restorative interventions for cognition in MS is stymied by major gaps in our knowledge of the natural history of cognitive decline and of the characteristics and mechanisms of cognitive dysfunction where it matters most -in the everyday lives of people with MS [12].…”