The project entitled: "Improving health-related quality of life in patients with rare autoimmune liver diseases through peer support: an international hybrid effectiveness study" has been selected for funding by the European Joint Program on Rare Diseases (EJP RD). The projects financed by EJP RD are very popular. About 300 proposals were submitted for this edition, of which only 20 were selected for funding. The study will be carried out in the Center for Treatment of Rare Liver Diseases at the Department of Hepatology and Internal Medicine of the Medical University of Warsaw led by Prof. Piotr Milkiewicz.
The idea of the project was born during the research that Prof. Milkiewicz coordinated within the ERN-RARE LIVER network and which is currently being prepared for publication. It examined factors affecting quality of life in a large group of patients with rare liver diseases from 15 EU countries. It turned out that the factor with the strongest positive impact on quality of life was the patient's confidence in the way they were being treated and the patient's reliable knowledge about their disease.
-In the reality of everyday practice, not only in Poland, it is difficult to devote enough time to such comprehensive education for the patient. However, in rare diseases, this is especially important because information from the Internet often has little to do with the truth. Prof. Bernd Lowe from the University of Hamburg has developed a novel model for educating patients who then educate other patients about their disease, says Prof. Milkiewicz. He also adds that preliminary research of using this model is very promising. They show significant improvements in patients' quality of life, as demonstrated by a publication by German researchers in the prestigious JAMA Psychiatry.
This model by Prof. Bernd Lowe will be applied for patients at the Center for Treatment of Rare Liver Diseases MUW. Then, the researchers, using modern and validated methods, will evaluate the extent to which the method used proved to be effective. Whether there has been an alleviation of symptoms that have the greatest impact on quality of life.
In addition to Prof. Milkiewicz, the study will be led by Maciej Janik, MD, who initially developed the logistics of the study and was instrumental in obtaining this grant. The researchers from our university will cooperate with teams from Hamburg, Toronto, Gent and Debrecen.