Coping with an Unpredictable Disease Trajectory: Findings from a National Needs Assessment

Thursday, May 29, 2014
Trinity Exhibit Hall
Robert Rapp, MPA , Multiple Sclerosis Association of America, Cherry Hill, NJ
Donna Van Alst, PhD , Office of Research and Evaluation Institute for Families School of Social Work, Rutgers, The State University of New Jersey, New Brunswick, NJ
Shrivridhi Skukla, PhD (candidate) , Office of Research and Evaluation Institute for Families School of Social Work, Rutgers, The State University of New Jersey, New Brunswick, NJ

Background: N/A


This mixed-methods study explores the challenges of living with the uncertainty of multiple sclerosis. While uncertainty may be inherent to many chronic conditions, it may be exacerbated for MS patients given the highly variable and unpredictable nature of the disease. Analysis of quantitative and qualitative data collected through a national MS Needs Assessment found that coping with the day-to-day and long-term uncertainty of the disease was among respondents’ greatest concerns and identified ways in which those challenges impact their lives.


The study utilized data from a 2012 national MS Needs Assessment, conducted by the Multiple Sclerosis Association of America in cooperation with the North American Research Committee on MS and the Rutgers University School of Social Work.  Responses were received from 1,051 subjects for a 42% response rate.  The 110-question survey, which was developed in collaboration with MS experts and patients, included open- and closed-ended questions. Data were collected via mail and online surveys. Analysis included frequencies, t-tests and analysis of variance. In addition, qualitative data from 750 respondents were explored using a combination of conventional and summative content analysis methods. 


Of the 36 need areas rated by respondents, coping with the long-term and day-to-day uncertainty of MS were among the most frequently reported. (Fatigue management/energy conservation was the most often reported need.)  Almost 50% of subjects reported needing help with day-to-day coping while almost 56% reported needing assistance with coping with long-term uncertainty. Analysis identified several statistically significant differences. People with unmet needs for assistance, less education, lower incomes and without health insurance reported higher levels of need related to coping with uncertainty. Qualitative analysis of open-ended questions further elucidated the ways in which respondents attempted to organize their lives despite the unpredictable disease trajectory.


Findings from this study highlight the importance of addressing issues related to uncertainty and coping for MS patients.  MS patients particularly seek ways to plan for their futures despite uncertainty. Lack of access to psychosocial education and skill development and mental health resources for many people living with MS are barriers to addressing this critical need.