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Regular and lifelong monitoring of treatment is important in order to prevent or slow progression in many chronic diseases, including PBC. With PBC, the small bile ducts in the liver are damaged by an autoimmune reaction of the body. If PBC is not treated, it can lead to liver cell damage. Given treatment, combined with annual monitoring, progression of the disease can usually be prevented or at least slowed down.
PBC is classified as a rare disease. In Germany, a maximum of 30,000 people are affected by it. Since 2017, Kautz5 gUG has been operating a central information platform at www.pbcnews.info for PBC patients, which is visited by more than 17,000 patients on average per year. The website contents were developed together with patients and physicians. During development, it was particularly important to us to ensure that the range of services be oriented towards the actual needs of the patients.
Based on discussions with patients and physicians, we know that regular monitoring of treatment, although important, does not always take place. One reason for this is that patients do not keep follow-up appointments, and not all providers use a recall system to remind them of appointments. Another is that patients are not always sufficiently informed about the topic of treatment monitoring.
Based on these facts, Kautz5 gUG created a short film on PBC treatment monitoring. As the film doesn’t feature any language, it is distributed internationally among patient organisations and communities. A flip-book was also created as an additional gimmick. It addresses the same topic via a different medium and can be handed out to patients and interested parties, not only by medical professionals but also by patient advocates.
You can watch the short film here: https://www.pbcnews.info/aktuelles-details/therapieueberwachung-bei-primaer-billiaerer-cholangitis-pbc.html