Informational Needs Survey Results
The Board and staff of MSAA strongly believe that a successful organization must be in constant communication with those we endeavor to serve. This is especially important when assisting those affected by the ever changing course of MS. Being attuned to the needs of our constituents is one reason we believe MSAA receives such positive feedback from our clients for its programs and services.
In 2006, MSAA completed a comprehensive needs assessment that was responded to by more than 700 individuals affected by MS. That survey yielded important data and insights which helped shape our newest program offerings, including MSi (Multiple Sclerosis information), Resource Detectives, and the content for many of our educational programs.
MSAA's most recent survey focused on assessing the informational needs of our clients. The data received from more than 350 respondents confirmed much of what we knew from previous evaluations, but also added important new information. According to survey results, clients continue to place the highest value on receiving information about: MS research, medications and treatments (4.57 average score on a five-point scale, with "5" being the highest level of importance); MS symptom management (4.50); and exercise, nutrition, and physical therapies (4.21).
Printed publications continue to be the most "preferred" method of receiving information for our clients (33 percent of responses). Attending in-person educational programs and support groups are also reported to be popular ways of learning (23 percent combined). And not surprisingly, the number of people who prefer to get their information via electronic means continues to grow.
MSAA will use these survey data, as we have in the past, to design the very best programs and services. We thank all of you who responded to this survey. We also hope you will help us continue to "enrich the quality of life for everyone affected by MS" by participating in future MSAA surveys and evaluations.
– Robert Rapp
Happy Birthday to the Resource Detectives Program
It's hard to believe that a year has elapsed since the start of the Resource Detectives Program, a virtual volunteering experience. We have over 1,000 volunteers registered and more than 5,000 resources reported, providing more than 40,000 services to the MS community. These resources are used by MSAA 's Helpline staff to assist clients who call our toll-free number or send email correspondence requesting assistance with their MS-related issues.
Our goal for the upcoming year is to upgrade the system used by the Resource Detectives database. This will enable us to share the data more efficiently in-house and also allow for a pilot program with select MS centers throughout the country.
We need volunteers to continue to sign up as Resource Detectives. Their job is to report new resources, ensuring that the latest and the best information for the MS community is listed in the Resource Detectives database. Everyone is welcome to sign up; we would like to see an increase of people with MS volunteering to help – as they know best what the MS community needs. For more information, please contact Bonnie Yares, Resource Detectives manager, at (800) 532-7667, extension 132, or via email at firstname.lastname@example.org.
We also welcome you to visit our website at support.mymsaa.org/detectives.
For more information about the Resource Detectives program, please see the feature article of the Summer 2007 issue of The Motivator. This may be viewed and downloaded by going to www.mymsaa.org/publications/summer07, or readers may call MSAA at (800) 532-7667 to request a copy.
– Bonnie Yares
New MS Video on Clinically Isolated Syndrome
As part of our continuing effort to use technology to reach more clients in more places than ever before, MSAA recently posted its seventh educational web video, titled A Closer Look at Clinically Isolated Syndrome and MS. This 20-minute video features an in-depth interview with MSAA Chief Medical Officer Dr. Jack Burks on the importance of understanding clinically isolated syndrome (CIS), how it differs from relapsing-remitting and other forms of MS, and the benefits of early treatment.
During the interview, Dr. Burks was asked: "How often does CIS evolve into relapsing-remitting MS?" His response, in part, was: "Well, by definition, CIS is a high-risk for getting relapsing-remitting MS. There 's one recent study that shows that 85 percent of the patients who are diagnosed with CIS initially will go on to relapsing-remitting MS in just two years. " Dr. Burks goes on to point out the importance of this information for early treatment with a disease-modifying therapy, which has been shown to delay the onset of MS.
To view this latest video as well as the other A Closer Look programs, please visit www.mymsaa.org. For readers without internet access, some videos are available on DVD through MSAA 's free Lending Library. Please see page 48 for ordering information.
– Peter Damiri
|Last Updated on Monday, 25 March 2013 11:19|