VIDEO – Ankylosing spondylitis is an autoimmune disease that is too often diagnosed too late and whose management is not yet optimal. A better dialogue between doctors and patients can change things.
Spondylitis should no longer be ankylosing in 2018 and for that, it must be diagnosed more quickly and it must be treated earlier and more appropriately.
The only way to improve this care is through better patient education, better understanding by doctors of patients’ expectations and concerns, and better understanding by patients of doctors’ explanations and way of reasoning.
Diagnosis too late
More than 7 out of 10 people will experience back pain during their lifetime, usually sporadically but sometimes chronically. In the majority of cases, the cause is related to an alteration of the spine. But in about 5 to 10% of cases, the cause can be linked to a chronic inflammatory disease: it is then a “spondyloarthritis”.
When low back pain recurs too frequently or lasts more than 3 months, especially in a person under 45, whether male or female, the only interesting question should be asked: “What time does the back it hurts the most: in the morning or in the evening? “.
If the answer to this question is: “in the morning”, if this pain can be responsible for waking up in the 2nd part of the night or early in the morning (“wake-up-morning” pain), if it is accompanied by stiffness in the back in the morning that lasts at least half an hour (“morning stiffness”) and then fades during the day. If this pain is relieved by at least 50% in less than 24 to 48 hours by a simple non-steroidal anti-inflammatory… the question of the existence of inflammatory low back pain no longer arises and the diagnosis will be confirmed by the rest clinical examination and examinations.
Doctors who do not manage enough worries
During spondyloarthritis, doctors are above all focused on establishing the diagnosis, eliminating differential diagnoses, assessing the prognosis and finally, defining an appropriate therapeutic plan and monitoring it. However, until quite recently, the very evaluation of the disease remained very empirical, or based on criteria which did not necessarily correspond to the patients’ expectations.
A French study, the EPOC study, had clearly shown that doctors are generally mistaken about patients’ concerns and that they focus their explanations on treatments, whereas patients’ fears concern more the disease and its evolution. Indeed, in this study, while these patients have suffered from spondyloarthritis for more than ten years and are doing well thanks to appropriate treatment, it turns out that they have very varied fears concerning the disease and not only its treatment, as well as often erroneous beliefs.
Nearly two-thirds of patients express, in fact, fears which mainly concern the evolution of their disease (still suffering from pain and a new inflammatory outbreak of the disease, having joint deformities, etc.) and a possible disability. (losing the function of all the joints, losing their autonomy, being a burden on their family, no longer being able to have projects, etc.). More seriously, more than one out of two patients is afraid of “ending up in a wheelchair” even though this risk is almost absent in these diseases.
The problem is that by focusing their explanations too much on the treatment, the doctors do not sufficiently reassure the patients. They risk leaving them alone in the face of erroneous beliefs and their anxieties, with probably the risk of poor follow-up of the treatment, even though it has now been shown that a well-adapted and well-monitored treatment will put the majority inflammatory rheumatism in near remission.
Patients who do not understand doctors well
Most doctors nevertheless provide explanations of the disease and the treatment, but due to the limited time of the consultation, these explanations are often a bit dense, difficult to memorize, and delivered in medical jargon that patients have difficulty understanding. However, it is possible to improve the level of explanations, by limiting the amount of information at each consultation, by using simple terms that the patient should not hesitate to have explained to him if he does not understand them. It is also necessary that the patients consult medical information sites validated by their doctor and by noting all the questions which come to their mind between the consultations in order to ask them during the consultation.
These are the questions that will allow the doctor to better understand the level of knowledge and understanding of the disease by the patient. The doctor will then be able to better adapt his speech, better question the patients on these expectations and their concerns. Nor should the patient, for fear of annoying the doctor, hesitate to tell him about minor pains or unusual signs. Each sign can have a special meaning for the doctor in the context of the disease. No withholding of information therefore. A smooth communication between the patient and the doctor is the only guarantee of a well-monitored and well-adapted treatment, essential in this chronic disabling disease if it is badly treated.
In chronic diseases, the doctor-patient relationship must evolve: the patient must know his disease well in order to adjust his treatment if necessary, or even to advance the consultation in the event of an unforeseen event. The patient must absolutely learn a new profession: to be a specialist in his disease and its treatment, exactly as in diabetes. The doctor must be the expert-consultant, who will answer questions, keep the patient informed of current events and update an appropriate therapeutic plan, all this in an atmosphere of empathy.
Interview with Mr. Cedric Stadelmann (France Spondyloarthritis Association)
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