A French study shows that doctors focus their explanations on treatments, while patients’ fears concern more the disease and its course.
The doctor-patient relationship is the basis for successful disease management and treatment, especially in chronic illnesses. However, the beliefs and fears of patients suffering from chronic diseases are not well understood. It is from this observation that the EPOC group set out to better understand the real fears of patients suffering from chronic inflammatory rheumatism.
226 patients surveyed
A questionnaire specifically developed for this objective, and already validated in a previous study, was offered to 226 patients with chronic inflammatory rheumatism (one third of ankylosing spondyloarthritis and two third of rheumatoid arthritis) who had been evolving for 12 years. This French study made the news of the last European congress of rheumatology, the Eular, because it reveals a very strong discrepancy between the real fears of the patients and those which their doctors attribute to them.
Indeed, while these patients have suffered from rheumatism for more than ten years but they are doing well thanks to an adapted treatment, it turns out in the EPOC study that the patients have very varied fears. about the disease and not just its treatment, as well as often mistaken beliefs about both the causes of the disease and its course.
Prof. Laure Gossec, rheumatologist at the Pitié-Salpêtrière hospital : ” In fact, they have a lot of fears about the disease… “
Wrong beliefs
Almost two-thirds of patients express fears which mainly concern the evolution of their disease (still suffering from pain and a new inflammatory outbreak of the disease, having deformation of the joints, etc.) and possible disability. (losing the function of all the joints, losing your autonomy, being a burden on your family, no longer being able to have projects…). More seriously, more than one patient in 2 is afraid “of ending up in a wheelchair” even though this risk is almost absent in these diseases.
Despite the training of patients which is developing in rheumatology departments, the very image of rheumatic disease therefore remains distorted with erroneous beliefs. Many people with chronic arthritis believe, for example, that the disease can be triggered by trauma or gluten intolerance and that progressive flares can be caused during exercise.
In this context, the fears related to the treatment only concern one in two patients, even though this information is largely privileged by doctors. And even in this case, the patients are especially afraid that the treatment will not work, even before being afraid of the side effects. This study therefore shows that the education of patients which is currently carried out in France can be greatly improved, both in substance and in form, with a more positive discourse.
Prof. Laure Gossec, rheumatologist at the Pitié-Salpêtrière hospital : ” We have to change our discourse a little towards the positive … “
This questionnaire, even if it is a research tool, is therefore useful in making doctors aware of the great discrepancy that exists between the fears they suppose to exist in the patients they treat and those that exist. also. This is a problem, because by focusing their explanations too much on the treatment, doctors do not sufficiently reassure patients. They risk leaving them alone in the face of erroneous beliefs and their anxieties, with probably the risk of poor follow-up of treatment, even though it is now shown that a well-adapted and well-followed treatment will put the majority inflammatory rheumatism in near remission.
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