Development of a Survey to Understand the Experience of Disability Retirement in Men with Multiple Sclerosis

Background: Needing to cease work prematurely due to multiple sclerosis symptoms is a reality for many men due to the high MS disease incidence and prevalence in mid-life.  Research exists to guide clinicians on strategies to prolong the work life of men with MS by managing symptoms and introducing workplace accommodations.  However, there is little research on how to help men psychosocially when they transition to nonpaid work prematurely.  Since healthy men struggle with the psychosocial transition to retirement, even when it is planned and at a socially appropriate time in the life trajectory, it is likely that men with MS have even more difficulty with the disability retirement transition. Since there is very little information on this topic in the literature to date, a survey of the population of interest is needed to verify if transition to nonpaid work is problematic for men with MS, and if so, why.  Objectives: The objective of this presentation is to describe the development of the Experiences with Disability Retirement of Men with MS Survey (EDRM).  Methods: The survey was designed using the tailored method approach to encourage maximal response rates.  Content was determined using information from: a) literature on: successful retirement transition for people without a disability, factors that influence successful disability transition, and occupational adaptation in people with MS, b) interviews with two men who ceased work prematurely due to MS symptoms, and c) the Canadian Occupational Performance Model of Engagement.  Once version 1.0 of the survey was developed, it was administered to two men with MS who had ceased work within the previous ten years to further establish content validity and ease of administration. Qualitative methods were used to verify that the survey captured all relevant information and had ease of use for the target population. A 'think-aloud' strategy was used to in interviews with the men to understand how participants arrived at their answers to the survey questions. Data was audio-taped and transcribed and analyzed using qualitative description.   Results: /Implications: Presentation of the EDRM survey at the CMSC conference will provide health professionals with an opportunity to contribute to the survey content areas. This further validation of content validity will allow for a robust survey that can provide empirical evidence on how men with MS cope with a transition to non-paid work. Conclusions: Transitions to nonpaid work is a new area for research in MS.  Development of a methodologically robust survey is important to gather information for health care providers to provide best care to men for successful psychosocial transition to premature work cessation.