Treatment approaches for improving QOL in ankylosing spondylitis
The time a person with ankylosing spondylitis spends undiagnosed can negatively impact quality of life.
Symptoms can affect one’s capacity for physical activity or social engagements, in turn affecting one’s emotions. The good news is that a diagnosis and subsequent treatment plan can ultimately reduce or even eliminate the negative impact on well-being.
Karmela Kim Chan, MD, rheumatologist at Hospital for Special Surgery, spoke with Healio about the impact of ankylosing spondylitis (AS) on quality of life (QOL) and factors that practitioners and patients should consider to improve QOL.
What is the most dramatic change in QOL for patients with AS? How does sex and age impact QOL?
Very often by the time patients get around to seeing a rheumatologist, they have had back pain for many months or years, with repeated visits to orthopedic or sports medicine [practitioners] and physical therapy, all seemingly without improvement. So they have changed their activities to accommodate their discomfort. Once the diagnosis is made and treatment is initiated, it can be quite life-changing if it works.
The improvement in pain and fatigue most likely leads to the ability to engage in pleasurable activities again, such as sports and socializing. There is some mental bandwidth spent on perseverating on illness and lack of well-being — patients get to claim that mental bandwidth back. Imagine being sick for years and feeling like your situation is hopeless and worrying about the future! It is often a huge relief just to get past that. And, of course, patients get back the time spent for doctors’ visits, including time spent trying remedies that have little benefit.
I cannot say there is much difference [between men and women]; everyone is just happy to have a diagnosis, be pain-free and have a semblance of their old life back.
Most patients are young adults. If I am making a new diagnosis of AS in a geriatric patient, it is usually an incidental finding and they were asymptomatic all along.
How does depression influence treatment and QOL?
Some patients are temperamentally pessimistic. Patients with depression are prone to anxiety. All of this can lead to a degree of catastrophizing that patients without depression or anxiety do not have. Of course, that is also very disruptive to QOL. Anhedonia is in fact a criterion for depression, and that creates a vicious circle.
What approaches can physicians use to detect AS?
Everyone hears about inflammatory back pain and how important it is as a signifier that something is amiss. But it is one thing to know about something for test-taking purposes, and it is quite another to be able to recognize something in real life. The most important tool, for this as for any other disease, is for the clinician to be thinking about the diagnosis in the first place. The so-called “index of suspicion” just means that, as a clinician, you are thinking about all sorts of possibilities — that is the best way to identify relatively rare illnesses. So if a clinician knows that AS is on the differential for a young patient presenting with back pain, then they can ask the right questions that then leads to the correct diagnostic strategy.
What should physicians consider when making treatment plans for disease management?
Physicians should review patient considerations such as convenience and desire for pregnancy. Keep potential contraindications in mind. Patient buy-in is key, even if it means there is a little delay in initiating treatment because patient needed to take some time to mull things over.
What steps can physicians take to improve patient QOL? What is something physicians wish their patients knew about improving their own QOL?
In the era of electronic health records, the ability of patients to message their doctors in real time is a nice feature — it makes patients feel like we are available to them. Support staff helping patients navigate the health care system, particularly prior authorizations and insurance kinks and the dreaded specialty pharmacies, can be helpful. Providing resources such as patient information pages from the Arthritis Foundation or UpToDate are useful, but a lot of my patients also have really been helped a lot by support groups that the Hospital for Special Surgery makes available to patients. This makes patients feel less alone.
Investing in oneself is huge and not often talked about. Some important examples include physical health (e.g., time or money spent either in physical therapy or at the gym or other physical activities that patients enjoy) and mental health (a good therapist can make a big difference dealing with issues that come up when one is dealing with a chronic illness).
What are major challenges to achieving a high QOL with AS?
Lack of finances, health literacy and social support all make dealing with chronic illness much more difficult.
What are unmet needs that would improve the outlook of life with AS?
Educating primary care providers to have a high index of suspicion could lead to earlier diagnosis. Also, insurance still gets in the way of patients getting the appropriate specialist visit, diagnostic tests and medications, and mental and physical therapy, which are big gaps in health care in general.