A quarter of patients do not agree with their doctor about their disease

Disagreement between people with early axial spondyloarthritis and their doctors happens in one-quarter of cases, and can affect how people are treated.

Spondyloarthritis is an umbrella term for several conditions that share many of the same features and symptoms, including ankylosing spondylitis, psoriatic arthritis and reactive arthritis. Patients can also be classified as having axial or non-axial (peripheral) disease, according to which joints in their body are affected. Axial disease affects the sacroiliac joint (in the back part of the pelvis) causing back pain and stiffness. It is well known that there is often a difference of opinion between doctors and patients when deciding how severe a disease is, or what the impact is on a person’s life. This difference in opinion (also called discordance) can make it hard to decide on the appropriate treatment, or might mean that people suffering with the disease feel dissatisfied with the care that they receive from their doctor.

The authors hoped to work out how often people in the early stages of axial spondyloarthritis disagreed with their doctors about their disease, and to see whether this difference of opinion changed over time.

The study included 708 people with early inflammatory back pain that suggested they had axial spondyloarthritis. People could join the study if they had inflammatory back pain that had lasted more than 3 months but less than 3 years – this is called early disease.

This was a prospective longitudinal study, which means that the patients were observed over a period of time and measurements taken, but there was no study intervention or medicine being tested. The study was conducted in 25 clinics across France. The people in the study and their doctors completed questionnaires every 6 months for 2 years, and then again after 3 years. The people with early axial spondyloarthritis completed the Patient Global Assessment (also called the PGA), and their doctors completed the Physician Global Assessment (also called the PhGA). The two questionnaires are thought to be in agreement if they have scores within 3 points of each other; those with differences of more than 3 points are said to disagree, or to be discordant.

The main findings of the study were that over 3 years, the patient’s PGA scores were always higher than those of their doctors. At all times, a quarter of people did not agree with their doctor about the severity of their disease. Importantly, it was not always the same people who disagreed with their doctor. The most important factors that predicted that there would be a difference between the patient and doctor assessments were when patients reported higher spine (back) pain and fatigue (tiredness).

Yes, these findings are new. The difference of opinion about disease severity between doctors and their patients has not been looked at before in people with early axial spondyloarthritis. There is not a lot of information that has been published on this subject before.

There are some limitations in the way the study was conducted. The questions used for the PGA and PhGA were not identical. The patient score takes into account the effect of the disease on the person’s well-being over the last week. On the other hand, the doctor’s score looks at disease activity. In addition, people completed the study questionnaire before their doctor each time, and the doctor could see their results. However, this is the normal way questionnaires are taken and used in clinics, and so this reflects how any difference of opinion that would be seen in a normal clinic. The study included people with inflammatory back pain that suggested that they had early axial spondyloarthritis. Almost one-third of the people included would not be diagnosed with the disease according to the ASAS criteria – a set of clinical rules for defining the disease, and this may have affected the results. Of note, disagreement between people and their doctors was slightly higher in patients without a confirmed diagnosis.

The authors suggest that this information should be taken into account by doctors when making shared decisions with patients. Overall, if disagreement occurs only once, it should not affect the doctor’s treatment decisions. If there is repeated disagreement the doctor should reconsider the patient’s status. Another study is planned to look at this effect in people with psoriatic arthritis – another type of spondyloarthritis.

These results suggest that your doctor should take any pain or fatigue you report into account when making treatment decisions for you. Other areas of health that you report may also be important – for example, anxiety, fear, sleep disturbance, coping, and your ability to work. If you are struggling with your disease you should talk to your doctor.

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Date prepared: September 2016

Summary based on research article published on: 22 October 2015

From: Desthieux, C. et al. Patient-physician discordance in global assessment in early spondyloarthritis and its change over time: the DESIR cohort. Ann Rheum Dis 2016;75:1661–66

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