CC20
Patterns in MS Needs Over Time
Objectives:
Utilizing data collected through a 2012 national Needs Assessment, the study documented the ways in which psychosocial support, wellness, MS treatment, medical advocacy, access to resources, and significant care needs among people living with multiple sclerosis change in relation to the length of time one has lived with the disease. Analysis identified high levels of need among respondents adapting to the diagnosis and those who had been living with the disease for 25 years or more. In addition, psychosocial support and wellness needs were both elevated and most likely to be unmet.
Methods:
The study utilized data from the 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 were explored using a combination of conventional and summative content analysis methods.
Results:
The newly-diagnosed population reported the highest levels of need related to psychosocial support, wellness, MS treatment, medical advocacy and access to resources. Needs decreased gradually as respondents gained experience with the disease, reaching a low among respondents who were between 10 and 14 years from diagnosis. An extended period of stability continued until about 25 years post-diagnosis, when a marked increase occurred. While the level of need changed across time living with MS, psychosocial support and wellness-related needs were consistently the most frequently reported needs and the least likely to be met for all groups.
Conclusions:
Findings from this study identify two critical time periods during which people living with MS may benefit from intensive case management and other services to address high levels of MS-related needs. In particular, efforts should focus on reducing the extended adaptation phase, marked by high but declining levels of need, among newly diagnosed respondents. Finally, resources are needed to address the consistently high levels of need related to psychosocial support and wellness, areas that may fall outside of the domain of traditional healthcare providers.