Program:
Public and Patient Education
- Budget:
-
--
- Category:
-
Diseases, Disorders & Medical Disciplines
- Population Served:
-
General Public/Unspecified
Program Description:
<p>SAA provides public and patient education programs to facilitate early diagnosis, promote effective treatment, and encourage self-help care for optimal quality of life. </p>
<p>SAA’s website, <a href="http://www.spondylitis.org/">www.spondylitis.org</a>, is updated regularly with the latest news and information about spondylitis treatment, medications and research. In addition, information about SAA events and seminars, supportive programs and the online Message Board community can also be found here.</p>
<p>SAA hosts free educational seminars in different metropolitan areas throughout the United States each year. All seminars include an experienced rheumatologist who provides an overview of spondyloarthritis along with current medications and other available treatments. Secondary speakers complement the program with presentations on other topics of interest including exercise, physical therapy, occupational therapy, the emotional impact of living with spondylitis, etc. These seminars provide an opportunity for attendees to ask questions and meet other people from the area impacted by spondylitis.</p>
<p>SAA offers free online seminar events, referred to as webinars. These webinars allow people to learn about specific spondylitis-related topics in the comfort of their home without having to travel. SAA hosts approximately 3 webinars each year; the live event is free and open to everyone in the spondylitis community. </p>
<p>SAA provides a library of audio interviews (podcasts) to SAA members, which include questions posed to spondylitis experts to provide information on a wide range of topics including spondylitis symptoms, medications, treatment, complications, etc. Members are also asked to submit their own questions to be answered during future podcasts.</p>
Program Long-Term Success:
<p>Spondylitis patients have improved quality of life.</p>
Program Short-Term Success:
Spondylitis patients are knowledgeable about spondylitis symptoms, diagnosis, treatment options and support resources. <br /><br />Spondylitis patients are empowered to seek appropriate treatment.
Program Success Monitored by:
<p>Evaluation of website analytics, feedback forms, program participation and satisfaction surveys.</p>
Program Success Examples:
www.spondylitis.org receives over 1 million hits per month. Since the redesign and relaunch of the website in July 2009, visitors spend 40% more time on the site reviewing video and audio from the experts as well as articles, diagrams and other information related to spondylitis.
Program:
Research
- Budget:
-
--
- Category:
-
- Population Served:
-
General Public/Unspecified
Program Description:
<p>For over 25 years, the Spondylitis Association of America
has encouraged and facilitated collaborations among prominent researchers as a
means of accelerating advances in spondylitis research, diagnosis and
treatment.</p>
<p><br />
</p>
<p>SAA’s
participation in the TASC Genetic Study (Triple A Spondylitis Consortium)
genetic study helped researchers identify two genes (ERAP1 and IL23R) that, in
addition to HLA-B27, increase the risk of developing spondylitis. Since then,
scientists announced the discovery of additional genesthat may provide further pieces of the genetic puzzle that makes
up this crippling disease. SAA served as the national subject recruiting center
for the TASC Study and provided amajor
portion of the subjects for the project -- without whom none of the research
would have been possible.</p>
<p><br />
</p>
While
SAA now serves a large community of people living with spondylitis, there are
many more who are not yet diagnosed. Our goal is to reach the hundreds of
thousands of people who do not yet know the cause of the fatigue and pain they
experience and thus are deprived of much-needed treatment. SAA developed a manuscript containing a validated 10-question test designed to help identify some of the symptoms that can be associated with AS and it has been accepted for publication to the peer-reviewed, scientific journal Arthritis Care and Research. SAA’s Screening Tool for Ankylosing Spondylitis provides a basis for
primary care physicians to refer patients to rheumatologists to obtain a
definitive diagnosis and begin treatment.
Program Long-Term Success:
<p>Researchers uncovered several new genes that contribute to
susceptibility for AS. </p>
<br />
People who exhibit symptoms of spondylitis are
referred to a rheumatologist to receive definitive diagnosis within a shorter
time frame than the average 5 – 7 years.
Program Short-Term Success:
<p>TASC Genetic study enrolled required number of study
participants.</p>
<p>SAA’s Screening Tool for Ankylosing Spondylitis has been
validated by researchers and accepted for publication to the peer-reviewed
scientific journal, Arthritis Care and Research.</p>
Program Success Monitored by:
<p>Number of research participants,
number of people utilizing screening tool, number of people with high
probability of spondylitis symptoms referred to rheumatologists.</p>
Program Success Examples:
Researchers
uncovered several new genes that contribute to susceptibility for AS.
Program:
Professional Education
- Budget:
-
--
- Category:
-
- Population Served:
-
General Public/Unspecified
Program Description:
<p>SAA developed the first-ever training
program for emergency first responders in collaboration with the National
Association of Emergency Medical Technicians (NAEMT). The program, "Ankylosing
Spondylitis: Managing Patients in an Emergency Setting, A Primer for First
Responders" which includes a video training module, is available to the
more than 800,000 emergency medical technicians and paramedics across the United
States. This program has also been accredited by CECBEMS (Continuing Education
Coordinating Board of Emergency Medical Services) and first-responders can
receive one pre-hospital credit.</p>
<p>In addition, SAA collaborates with
medical institutions to offer physicians’ CME courses. Recent collaborations include partnering with
Cedars-Sinai Medical Center to offer physicians the CME course, "Medical
and Surgical Approach to Spine Disease and Spine Deformity in Ankylosing
Spondylitis" as well as the CME for rheumatologists and other clinicians
titled "The Diagnosis and Management of Ankylosing Spondylitis" in
partnership with Albert Einstein College of Medicine and Montefiore Medical
Center.</p>
Program Long-Term Success:
Medical
professionals are aware of the additional complications associated with
treating spondylitis patients. Spondylitis patients receive proper
treatment.
Program Short-Term Success:
Medical
professionals participate in CE and CME courses.
Program Success Monitored by:
Number
of participants, number of participants receiving satisfactory score on
continuing education test.
Program Success Examples:
SAA has partnered with the National Safety Council, American Red Cross, American Heart Association, American Safety and Health Institute, National Highway Traffic Safety Administration, Department of Transportation, American College of Osteopathic Emergency Physicians, National Volunteer Fire Council and the Commission on Accreditation of Medical Transport Systems to market this training module to their constituents.
Program:
Community Based Patient Programs
- Budget:
-
--
- Category:
-
- Population Served:
-
General Public/Unspecified
Program Description:
<p>SAA sponsors over 35 support groups stretching across the
US from Anchorage, AK to Miami, FL. These groups focus on education and support while providing a safe and
friendly environment for people to discuss the day-to-day practical challenges
of living with spondylitis. SAA recruits
and provides guidance to support group leaders through an interview screening
process, trainings, and quarterly conference calls. These groups also play an integral role in
helping to increase awareness in their communities through their participation
in local health fairs and fundraisers.</p>
<p>SAA’s peer network program provides an opportunity for
one-on-one support within the spondylitis community. People newly diagnosed with spondylitis are
matched by Programs staff with peers who have years of experience managing their
own spondylitis symptoms. This program
helps people newly diagnosed with spondylitis feel less isolated, understand
the importance of learning about managing the disease, and feel supported and
encouraged to empower themselves for optimum health. Peers regularly communicate by email or
telephone, with Programs staff checking-in regularly with each peer match to
ensure a successful program. </p>
Spondylitis.org has an online community of
message boards that provides an opportunity for spondylitis patients and their
loved ones to start and contribute to discussions related to managing
spondylitis. In addition, SAA
participates on several social networking sites including Facebook, MySpace, YouTube and
Twitter. SAA staff provide updates and
information through these online communities to promote SAA’s mission.
Program Long-Term Success:
<p>Spondylitis patients are knowledgeable about spondylitis
symptoms, diagnosis, treatment options and support resources. <br />
</p>
<p>Spondylitis patients are empowered to seek
appropriate treatment. <br />
</p>
<p>Spondylitis
patients feel supported and less isolated while living with spondylitis.</p>
Program Short-Term Success:
<p>Spondylitis patients feel less isolated and understand that
there is a community of spondylitis patients.</p>
<p>Spondylitis patients are encouraged to manage their
spondylitis appropriately.</p>
Spondylitis patients are encouraged to learn
about the symptoms, diagnosis, treatment options and support resources.
Program Success Monitored by:
Participation,
interaction, customer satisfaction survey.
Program Success Examples:
Participants in the Peer Mentor program rate their overall satisfaction with the program a score of 6 out of possible 7 points.