Care Mapping Study Initiated for Ankylosing Spondylitis by TheSpineCommunity
TheSpineCommunity has initiated an online research survey for individuals with Ankylosing Spondylitis (AS) in order to better understand their access to care and their diagnostic journey. There is both a significant delay in diagnosing AS and an overall under diagnosis of the condition according to Dr. David Borenstein MD, a rheumatologist, a past president of the American College of Rheumatology and a leading expert on Ankylosing Spondylitis and back pain. "Inflammatory arthritis of the spine, in all its various forms including ankylosing spondylitis, is an important health issue in the USA. Recent USA population studies report that 1.4% have a spondyloarthritis. The consequence of this survey is the possibility of over 4 million individuals who have these disorders. This is even greater than the 0.6% estimate for rheumatoid arthritis, another disabling disease of the joints in the arms and legs. Diagnosing spondyloarthritis early in the course of the illness has the potential for preventing spinal fusion and hip joint destruction that results in permanent disability. Early treatment is effective in preventing the usual progression to joint destruction and reduced survival.
The purpose of the survey is multifold. First is to evaluate and better understand the early symptoms of individuals ultimately diagnosed with AS; Second to catalogue how those symptoms influenced their access to health care system; Third to enumerate the medical advice and treatment options they were presented with prior to receiving their definitive AS diagnosis. The under diagnosis and delays in receiving appropriate medical care have important consequences to individuals impacted by this condition that could be prevented with earlier diagnosis and appropriate treatment. The reasons contributing to the delay and under diagnosis are multifactorial and have to with societal perceptions of back pain, a plethora of healthcare providers that “treat” back pain with minimal experience with AS patients, and a poor patient understanding of what type of specialist is most appropriate to see if someone has symptoms of AS. The results of the research will be used to develop educational programming to help individuals with back pain understand when they should see an AS specialist as well as reach AS patients earlier in their disease course to connect them with a rheumatologist experienced in the management of AS and other inflammatory conditions of the spine.
TheSpineCommunity is a unique online network for people with back pain - spinal conditions and their caregivers. TheSpineCommunity is a fully moderated social network and resource center that provides peer-to-peer support for individuals with back pain including Ankylosinng Spondylitis, other inflammatory arthritis, and mechanical conditions of the spine where they can learn, support, share, and connect with others who have similar issues and concerns.
The Rheumatoid & Arthritis Connection is a leading online community and resource for individuals with inflammatory arthritis including rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis and SLE. TheR&AConnection combines valuable information about diagnosis, treatment, healthy living, support resources, and breaking news with a social community created to provide patients and caregivers the opportunity to connect with others. Launched in 2014, theR&AConnection has over 20,000 unique monthly users and is part of the growing OMNI Connect network of chronic health condition social communities.
About OMNI Health Media
OMNI Health Media (OMNI) is a leading specialty Website and Application developer and publisher of consumer health information. OMNI has developed CancerConnect, theGIConnection, theR&AConnection, and theSpineCommunity. These social communities can be accessed directly or used by gastroenterologists, oncologists, and rheumatologists to provide support and build community on their websites for their patients in a safe, secure, moderated environment.
Originally established in 1996 as a cancer patient education resource, OMNI has consistently expanded its platform by integrating technologic advances with its health information content, applications and services. OMNI has been recognized for producing award-winning, multi-media content which reaches over 1.5 million health information seekers in English, Japanese, and Spanish every month.
OMNI Health Media also produces and manages Women magazine, and The Web Chats with the Experts interactive series featuring thought leaders from institutions such as George Washington University, Memorial Sloan-Kettering, Harvard, Roswell Park, UCSF, Roswell Park, and other prominent health centers.