University of Kansas Multiple Sclerosis Achievement Center: A Personal Experience of Creating a Successful Sustainable Achievement Center

Background: The concept of an MS Achievement Center (MSAC) was developed by Dr. Randy Shapiro in the 1980s. Models vary but are generally focused on physical, cognitive and emotional wellness activities. Programs typically schedule participants one day a week for 4-6 hours and happen in a variety of settings from community centers to hospitals. All centers focus on providing tools to help maintain independence. Today there are only 6 MSACs in the US.

The Mid America MSAC opened as a 501c3 in 1997 under the leadership of Dr. Lynch. In 2016, through a partnership with the University of Kansas (KU) Medical Center they were awarded a grant from the Conrad N Hilton Foundation to expand the program to serve more individuals. The Mid America MSAC became the KU MSAC and moved into their permanent home at KU. 

Objectives: To discuss our personal success story as a replicable model for other MS providers. 

Methods: Dr. Lynch’s vision is to maintain a more medical model keeping experienced therapists involved daily. Though costlier, this provides a higher level of care/service. Therapists are able to see nuanced changes in members from week to week and intervene early. Members attend the KU MSAC one day per week for 5 hours, participating in Morning Movement, Brain Balance, Connection Group and Electives. Staff includes 4 health care professionals, a social worker, a medical and an executive director. Volunteers and health profession students are an integral part of the program. Funding is a hybrid model with significant fundraising, member investment and volunteer engagement. Formal outcome measures are gathered at entry into the program and at annual intervals, including MS Quality of Life Index, 9-Hole Peg, Symbol Digit Modalities and Function in Sitting Test. 

Results: We have a 5500-square-foot area including a gym with multiple exercise machines geared to help people with physical difficulties exercise successfully. We currently have 65 members with plans to expand to 80+. Participants and care partners alike report a positive impact on their quality of life and look forward to coming every week.  Formal outcome metrics are currently being collected.

Conclusions: An MSAC offers many services to those who suffer from progressed MS. Physical activity does improve depression, fatigue, spasticity, pain, mobility and much more. The MSAC model is currently underused and should be considered as a part of a comprehensive MS center.