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Diagnostics and therapy of interstitial cystitis (IC)
Stinging abdominal pain and urge to urinate with up to 60 toilets during the day and night: The predominantly female patients with interstitial cystitis (IC) are under enormous suffering; the disease often leads to social isolation and disability. In addition, the clinical picture is still relatively unknown and the chronic inflammation of the bladder wall is still difficult to diagnose.
On average, it takes nine years to make a diagnosis; Half of the patients need more than 20 visits to the doctor before their excruciating suffering gets a name. With the creation of the first German guideline on "Diagnostics and Therapy of Interstitial Cystitis (IC / BPS)", the German Society for Urology eV (DGU) and the Association for Interstitial Cystitis, the ICA Germany eV (ICA), now have a decisive one Step towards better care for those affected. The consultation version of the guideline, which was developed under the leadership of the DGU, will shortly appear online on the homepage of the Working Group of the Scientific Medical Societies (AWMF) online.
After many years of a doctor's odyssey, the diagnosis of “interstitial cystitis” is finally made by 99 percent of urologists. "With the interdisciplinary guideline, we now have the opportunity to provide information across specialist areas, to sharpen the general sensitivity of doctors for IC and to optimize the quality of care," says DGU press spokesman Prof. Dr. Christian Wülfing. The guideline is primarily intended for doctors and practitioners specializing in urology, gynecology, general medicine, pain therapy and physiotherapy. Prof. med. phil. Thomas Bschleipfer deserves the professional society.
"After decades of efforts to set standards for diagnosis and therapy of the rare disease, a key milestone of S2k quality has been reached," says Bärbel Mündner-Hensen. She is a founding member and federal chair of ICA Germany, which is celebrating its 25th anniversary this year. The association supports the interests of IC patients nationally and internationally on a scientific and political level and initiated the guideline project at the DGU.
The ICA, which works with renowned medical doctors on its medical advisory board, had already achieved two important goals in 2017: the non-profit association developed a catalog of requirements for the certification of proven treatment centers. In September 2017, the continence and pelvic floor center at the Black Forest Baar Clinic was recognized as the first competence center in Europe. In the meantime, the Marien Hospital in Herne and the Municipal Clinic in Lüneburg have also successfully completed the accreditation process; further certifications are pending.
The ICA had long fought for reimbursable medication. With the approval of the active ingredient sodium pentosan polysulfate for the therapy of IC by the European Medicines Agency (EMA), those affected have had access to a medication for the first time since October 2017, which is paid for by health insurance companies.
Interstitial cystitis is not curable. Multimodal therapies, i.a. drug therapies, bladder installations and pain therapy can only prevent the disease from progressing and alleviate symptoms.
The causes of IC, which are associated with concomitant diseases such as muscle and joint pain, migraines, depressive moods, allergies, colon and stomach problems, are not well known. The disease is described as an immune and barrier defect in the tissue of the urinary tract, in particular the protective so-called GAG layer of the urinary bladder, which exposes the bladder wall to damaging constituents of the urine and can trigger an ongoing inflammatory process. It is estimated that 18 out of 100,000 women in Europe are affected, and the number of unreported cases is very high. "The successful implementation of the guideline can counteract this," said DGU press spokesman Prof. Wülfing.
The need for research remains high. "In order to better research therapy options, the next step is a scientific consensus on the exact differentiation of the various forms of the disease, which will allow more precise patient selection in future studies," said ICA Chair Bärbel Mündner-Hensen, who already In 2013 she was honored with the Federal Cross of Merit for her commitment to IC research, education, medical training and IC self-help. A clinical drug trial is currently underway, which includes is managed by DGU guidelines coordinator Prof. Thomas Bschleipfer.