Mr. Hitch explains that with increasing public awareness of ankylosing spondylitis, fewer cases of this diagnosis will be missed, and individuals who have patiently treated their back, neck or hip pain conservatively can be further evaluated by a rheumatologist. Indeed, recognizing that HLA-B27 is inherited in a Mendelian fashion and recalling that his father has experienced back pain for many years, Mr. Hitch urged his father to seek evaluation, leading to a correct diagnosis of ankylosing spondylitis, just like his son.
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Mr. Hitch states that the same strong will that allows many patients with chronic back pain to move on with life despite significant symptoms can sometimes cause reticence with regard to seeking an in-depth evaluation and treatment with a rheumatologist. “The mindset of a lot of people with ankylosing spondylitis is fighting the good fight,” Mr. Hitch said. “For my father, his back pain was starting to result in depression, and I pulled him aside and explained that I inherited risk factors for this condition and that, at worst, he could undergo some blood tests and imaging to see if this diagnosis applied to him as well. It was not a hard conversation to have, but one that we had to have many times.”
The field of rheumatology would do well to imitate Mr. Hitch in his relentless pursuit of the truth, and perhaps then the patient-reported outcomes by which we measure disease activity will best reflect the true experience of the patients that we hope to help and serve as an even more useful tool in the treatment of disease. As Mr. Hitch notes, “Doctors learn a lot about a lot, but patients can give them the knowledge and experience they seek to help them and others. In turn, patients should give their trust and faith to their doctor, share their views with them, and listen to all options.”
Jason Liebowitz, MD, completed his fellowship in rheumatology at Johns Hopkins University, Baltimore, where he also earned his MD. He is currently in practice with Arthritis, Rheumatic, & Back Disease Associates, New Jersey.
- The four founding physicians. Johns Hopkins Medicine website. http://www.hopkinsmedicine.org/about/history/history5.html.
- Garrett S, Jenkinson T, Kennedy LG, et al. A new approach to defining disease status in ankylosing spondylitis: The Bath Ankylosing Spondylitis Disease Activity Index. J Rheumatol.1994 Dec;21(12):2286–2291.
- Calin A, Garrett S, Whitelock H, et al. A new approach to functional ability in ankylosing spondylitis: The development of the Bath Ankylosing Spondylitis Functional Index. J Rheumatol. 1994 Dec;21(12):2281–2285.
|Figure 1: The Bath Ankylosing Spondylitis Functional Index (BASFI)|
|Rate the following on a scale of 0–10, with 0 being “easy” and 10 being “impossible”:|
|1||Putting on your socks or tights without help or aids (e.g., sock aids)?|
|2||Bending forward from the waist to pick up a pen from the floor without an aid?|
|3||Reaching up to a high shelf without help or aids (e.g., helping hand)?|
|4||Getting up from an armless chair without using your hands or any other help?|
|5||Getting up off the floor without any help from lying on your back?|
|6||Standing unsupported for 10 minutes without discomfort?|
|7||Climbing 12–15 steps without using a handrail or walking aid (one foot on each step)?|
|8||Looking over your shoulder without turning your body?|
|9||Doing physically demanding activities (e.g., physiotherapy exercises, gardening or sports)?|
|10||Doing a full day of activities whether at home or work?|
|Functional ability: The mean of the individual scores is calculated to give the overall index score. Scores on the BASFI of 6/10 suggest high levels of functional limitation.|