There are many diseases that are so rare that it takes a long time for patients to receive a correct diagnosis. Often, it is only during a stay in a specialized rehabilitation clinic in a health destination that the cause of the symptoms becomes clear.
Dr. Martin Gehlen, Chief Physician of the Rheumatology and Osteology Department at Klinik DER FÜRSTENHOF in the spa town of Bad Pyrmont, and his team collected evidence for the importance of rehabilitation in the rare blood disorder systemic mastocytosis as part of a scientific study Systemic mastocytosis involves an increase in certain blood cells in one or more organs, which can result in a variety of non-specific symptoms throughout the body. The Klinik DER FÜRSTENHOF is a spa and rehabilitation clinic specializing in the treatment of osteological and rheumatological conditions a clinic in Bad Pyrmont, Germany. It is part of our spa operating company “Niedersächsisches Staatsbad Pyrmont Betriebsgesellschaft GmbH” (Staatsbad Pyrmont). All therapy concepts involve the use of the natural remedies of Bad Pyrmont: mud, healing water, and carbon dioxide.
Indolent systemic mastocytosis (ISM) is a group of heterogenous diseases characterized by abnormal accumulation of mast cells in at least one organ which can cause of osteoporosis. It is known that ISM can be a cause of osteoporosis. However, it was unclear until now how often systemic mastocytosis is causally present in the rehabilitation of patients with osteoporosis and what impact it has on the clinical course and employability.
The research team investigated the relationship between systemic mastocytosis and osteoporosis and the role of spa and rehabilitation medicine in this context. The monocentric, retrospective cohort study included all patients who underwent rehabilitation at Klinik DER FÜRSTENHOF in Bad Pyrmont for osteoporosis between 2005 and 2015. A total of 8392 patients were treated with specific therapy concepts.
The study shows that the course of osteoporosis in systemic mastocytosis is much more severe than in other causes of osteoporosis. In addition, employability is highly threatened if the diagnosis is not made promptly. In all cases studied, the diagnosis of mastocytosis was only made during rehabilitation and on average five years after the diagnosis of osteoporosis. Early diagnosis and targeted therapy could have prevented severe outcomes, such as vertebral fractures.
In summary, it can be concluded that systemic mastocytosis is a significantly underestimated condition in a cohort of patients with osteoporosis undergoing rehabilitation through the German Pension Insurance (DRV). This applies to the frequency, severity of the disease, and the social-medical prognosis. It is highly likely that earlier diagnosis and rehabilitation would have a significant positive impact on the clinical course and employability. From our perspective, the study demonstrates the importance of rehabilitation in a health resort. In all cases, it was only there that the correct diagnosis could be made, and a tailored treatment combining medication and rehabilitative measures could be initiated. This study assists in finding arguments that an early health resort stay is important for improving the health.
1. Short description of the research topic and medical goal
In the study 3 cohorts were formed and compared:
(1) patients with osteoporosis who did not undergo bone biopsy,
(2) patients who later received a diagnostic bone biopsy,
(3) patients diagnosed with ISM.
We were able to demonstrate that ISM is generally a rare cause of osteoporosis, occurring in only 0.5% of cases. However, among younger patients, especially men under 60 years and pre- or perimenopausal women, the prevalence of systemic mastocytosis is much higher, with over 5% of cases. Furthermore, we found that the course of osteoporosis in ISM is much more severe compared to other causes. On average, patients with ISM had twice as many vertebral fractures compared to the control group. It should be noted that the selection for bone biopsy was already due to a severe course of the disease.
In all cases, the definitive diagnosis of mastocytosis was only made during rehabilitation. On average, the diagnosis was made 5 years after the outpatient diagnosis of osteoporosis. This is problematic because early diagnosis with targeted therapy could potentially have prevented further fractures in many cases. The social-medical data indicate that employability is highly threatened if the correct diagnosis is not made in a timely manner.
2. Originality
Patients with osteoporosis and vertebral fractures were studied. The consequences of vertebral body fractures are unbearable pain, restricted movement, quality of life and the ability to work. The study was able to show that the patients whose cause was systemic mastozoytosis had a much more severe course than those with other causes of osteoporosis.
The data suggest that early diagnosis of mastocytosis leads to a significantly better course.
The starting point of the scientific study is the case of a patient who suffered her first vertebral fractures at the age of 51 with a diagnosed osteoporosis. In the following years, significant consequential fractures occurred, leading to severe functional limitations and inability to work. The data collected by Klinik DER FÜRSTENHOF suggested that this could have been prevented if the patient had received specific rehabilitation measures in a specialized osteological clinic after the first fractures, where mastocytosis would have been identified as the cause of the osteoporosis.
Our data suggest that this could have potentially been prevented if the patient had received specific rehabilitation measures identifying mastocytosis as the cause of osteoporosis after the initial fractures.
3. Use of medical methods and created new medical programmes
The decisive benefit of the work is that the early clarification of the cause of osteoporosis improves the prognosis. The early diagnosis in combination with therapeutic applications in the health resort (physiotherapy, movement therapy, moor applications, water applications) help the patients to cope better in everyday life so that they can remain in work.
4. Importance of the research for the medical spa sector
This work is an example of the holistic treatment of diseases in the spa. A clear diagnosis is the basis for selecting physical and balneological treatments. The aim is for patients with osteoporosis to visit the health resort in order to first receive a comprehensive clarification and then a targeted drug and non-drug therapy.
With this application, we submit the work “Osteoporosis Caused by Systemic Mastocytosis: Prevalence in a Cohort of 8392 Patients with Osteoporosis” by Dr. Martin Gehlen. The basis is an article published by us in the international peer-reviewed journal “Calcified Tissue International.” It was awarded the Boxberger Prize in 2022 which demonstrates the importance of our work in the medical spa sector. The prize is one of the most highly endowed scientific awards in the field of health sciences in Germany. A translated press article
“Pyrmonter Clinic Wins Boxberger Prize for Osteoporosis Research” is attached. Additionally, the application includes the poster “Rehabilitation of rare serious diseases” presenting interim results for which we received a poster award at the Rehabilitation Science Colloquium in 2019. To illustrate the clinical significance of the topic, we have attached the short case report “12 Vertebral-Body Fractures and Simultaneous SkinChanges” published in the German Medical Journal (Deutsches Ärzteblatt). The case describes a patient who experienced initial fractures due to osteoporosis at the age of 51.
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Heiligenangerstraße 6, Bad Pyrmont
Germany