Background: Approximately 30% of people with multiple sclerosis (MS) require caregiving, with unknown prevalence of abuse and neglect. To explore these issues, we created the Scale to Report Emotional Stress Signs–Multiple Sclerosis (STRESS-MS). The objective was to develop, validate, and field-test a self-report questionnaire for screening people with MS for mistreatment.
Methods: We developed the STRESS-MS questionnaire and administered it to 102 adults with advanced MS-related disability and 97 primary informal caregivers, correlating responses with direct observation of mistreatment, conducting an item analysis, and evaluating validity using a Longitudinal, Expert, All Data (LEAD) panel.
Results: Most STRESS-MS subscales correlated highly with criterion-standard LEAD panel evaluations of mistreatment, with strong concurrent and discriminant validity. Nearly 53% of participants with MS reported experiencing psychological abuse; 9.8%, financial exploitation; 6.9%, physical abuse; 4.9%, neglect; and 3.9%, sexual abuse. Protective factors for people with MS included social support and older age; risk factors included depression and aggressiveness. The greatest risk factor was an informal caregiver who spent 20 or more hours per week caring for the person with MS.
Conclusions: The STRESS-MS questionnaire is reasonably reliable and valid for detecting caregiver mistreatment in adults with MS. Although most informal caregivers are not abusive, this study highlights an underrecognized need to detect and prevent abuse and neglect of people with MS.