Recalibrating Function: How Living With Multiple Sclerosis Shapes Definitions of Good and Bad Hand Function and Balance

Sofia Castilla

Research Mentor: Rachel Bergmans
Mentor Department: Health Equity Core, Chronic Pain & Fatigue Research Center, Department of Anesthesiology, Medicine
Author(s): Dominique Kinnett-Hopkins, Erika Barker, Sofia Castilla
Session: Session 1 (9:00 AM – 9:50 AM)
Presentation Type: Poster 90

Abstract

Background: Clinical definitions of “good” and “bad” function are often treated as objective constants. However, during a larger mixed-methods trial, an emergent pattern was identified, suggesting that these definitions may be fundamentally reshaped by the experience of living with a chronic condition. Methods: We conducted a secondary data analysis of a parent mixed methods study to understand how individuals with and without multiple sclerosis (MS) conceptualize “good” and “bad” hand function and balance, exploring benchmarks that exist outside of traditional clinical objectives. Fifty-four interviews were selected for reanalysis with a qualitative description approach. Results: This study included 26 people with MS and 28 people without MS. Analysis revealed three themes: 1) Daily-life benchmarks; 2) Automaticity defines good function; 3) MS recalibrates poor function. Good function was consistently described as effortless, reliable and confidence producing. In contrast, people with MS described poor function as less about absolute inability and more about day-to-day variability, a need for vigilance and compensatory strategies, and heightened safety and injury concerns. Participants without MS often used normative or hypothetical frames (e.g., “no pain,” “works as intended”), with less emphasis on ongoing monitoring and adaptation. Conclusion: People with and without MS used functional, task-based criteria to define good and bad hand function and balance. However, living with MS shifted these concepts towards standard centered on reliability, compensatory burden, and safety rather than fixed clinical ideals. Incorporating these patient-derived benchmarks into measurement and goal setting may improve the ecological validity of some outcomes and inform rehabilitation targets to the priorities of those living with MS.