Chairwoman of Revma Liga ČR: I Hope We Improve Our Approach and Treatment of Osteoporosis in the Czech Republic
Patients with inflammatory rheumatic diseases have a significantly increased risk of developing osteoporosis and related fractures. At the same time, this disease is considerably underestimated in the Czech Republic, and more attention is given to it only at the stage of osteoporotic fractures. To what extent does the patient organization Revma Liga ČR, which unites patients with rheumatic diseases, engage in this issue? We asked its chairwoman Edita Müllerová.
Please describe the specific activities of your organization dedicated to the risks associated with this disease?
We inform about the disease both on our association's website and, of course, on social media. We want to deliver as much information as possible to patients and at-risk individuals in various forms to meet their diverse needs. Therefore, we have filmed two videos that you can find on our YouTube channel and on our website under the “Diseases” tab. Interested parties can also use a chatbot on the website to guide them. In 2024, we want to further intensify patient and at-risk individual awareness. I don't want to reveal too much, but if everything goes according to plan, it will be another big step towards the early detection of people with osteoporosis.
Do you feel that the awareness among the general public about the diseases resulting from bone mass loss, their diagnosis, and treatment is insufficient in the Czech Republic?
From my perspective, there is indeed a lack of sufficient awareness here. Osteoporosis is an underestimated disease not only in our country, and therefore we strive to maximally support awareness and general knowledge about this disease as well. In the Czech Republic, attention is generally paid more to the consequences of osteoporosis, i.e., fractures, but even the therapy after an osteoporotic fracture is unfortunately often neglected.
Do you have any comparison with the situation in Western Europe in this context?
I haven't seen data on public awareness of osteoporosis. What we can compare is the approach to treatment and diagnosis. We do not perform very well there, but I believe we will “improve” thanks to the national population program for the early detection of osteoporosis in the Czech Republic, which was launched in April 2023.
Patients need to take responsibility for their health
Do you have data on how many patients in your organization are being treated for osteoporosis?
We do not collect such data. Combined with the basic information we record for our members, it would be very sensitive information. We can only assume and estimate how many fall into the at-risk group. However, we are considering conducting a larger anonymous survey in the future, where we will also ask about the presence of other diagnoses among respondents.
If a rheumatology patient is concerned about osteoporosis, what do you advise them?
We first recommend that they gather information from our website and, if they suspect any problems, consult their attending physician. Patients sometimes fear further examinations, but we reassure them that there is no need to worry. This is why we filmed a video showing the process of a densitometer examination. People can see what to expect during the examination from the comfort of their homes and potentially request a referral from their doctor.
Is it advisable for an at-risk individual to ask their general practitioner or rheumatologist for a referral for possible osteoporosis diagnosis?
Definitely. It is necessary for the patient to take responsibility for their health. Nowadays, when doctors are overwhelmed with administrative tasks, we cannot expect them to think of everything. Particularly patients who have been treated with corticosteroids for a long time need to undergo regular examinations.
We can direct at-risk individuals to specific specialists
There is a general shortage of rheumatologists and osteologists in the Czech Republic. Does your organization try to highlight and influence this problem at the state level?
We do what we can. The problem is that there is a general shortage of doctors, and priorities are primarily shifting to primary care.
If patients associated with Revma Liga have trouble finding a specialist, can you help them establish contact?
Yes, we cooperate with the Society for Metabolic Bone Diseases of the Czech Medical Association JEP and support the early detection program for osteoporosis in the Czech Republic. Thanks to this cooperation, we can direct patients to the right attending doctor who will provide the necessary care.
Do you plan any additional activities related to this issue?
We want to describe the basic “patient journey”, helping guide at-risk individuals to the right examinations at the right time. The already mentioned planned activities for 2024 will target both at-risk individuals and already diagnosed patients. They should help them navigate the healthcare system to ensure they are well taken care of.
Lenka Kadeřávková
MeDitorial editorial team
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