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Improvement in the management of rare diseases in croatia based on the protocol for hereditary angioedema = Poboljšanje zbrinjavanja bolesnika s rijetkim bolestima u hrvatskoj - temeljeno na protokolu za hereditarni angioedem
Karadža-Lapić, Ljerka ...
Rare diseases affect up to 6%-8% of the population and pose a challenge to healthcare professionals and healthcare system. Hereditary angioedema is a rare life-threatening, debilitating disease ...characterized by recurrent edema attacks. It is essential to establish the diagnosis as quickly as possible. The Healthcare Network was created in order to prevent mistreatment of hereditary angioedema. This study evaluated the usefulness of the Hospital Information System and the Healthcare Network in urgent management of hereditary angioedema. The Instructions for Hereditary Angioedema that contain information on the diagnosis, instructions for treatment, preventive measures prior to a dental procedure, endoscopy or surgery under general anesthesia, available regimens and storage location in the Hospital, specialist's telephone number in emergency, and name of the family member to be contacted, were implemented in the Hospital Information System, Šibenik General Hospital as a protocol for urgent management. Data on the treatment before and after implementation of the Instructions for Hereditary Angioedema were compared. Comparing medical decisions before and after implementing the Instructions for Hereditary Angioedema in the Hospital Information System revealed that following implementation of the Instructions, correct therapy was administered more often (p=0.006, Fisher exact test) and shortterm prophylaxis applied more often before medical procedures (p=0.011, Fisher exact test). Healthcare Network raised the physician awareness of this disabling and potentially fatal disease, led to accurate diagnosis and timely treatment, enabled short hospital stay, prompt recovery, and reduced absenteeism from work due to hereditary angioedema. With specific modifications, it could also be extrapolated to other rare diseases.
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