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Uvod: Hemofilija je redka dedna bolezen, ki prizadene predvsem moške in je vezana na kromosom X. Posledica je pomanjkanje koagulacijskega faktorja VIII ali IX in nagnjenost h krvavitvam. Delimo jo na hemofilijo A in B, glede na resnost bolezni pa na blago, zmerno in hudo obliko hemofilije. Spremljajo jo spontane krvavitve v sklepe in mišice. Bolezen zdravimo profilaktično ali po potrebi z dodajanjem manjkajočega koagulacijskega faktorja. Najpogostejša posledica je hemofilna artropija, ki je posledica krvavitev v sklepe. Namen: Želeli smo ugotoviti adherenco na zdravljenje odraslih bolnikov s hemofilijo v Sloveniji in njihovo kvaliteto življenja. Poleg tega smo ugotavljali še značilnosti bolezni bolnikov s hemofilijo v Sloveniji in njihov življenjski slog. Metode dela: Teoretična izhodišča za diplomsko delo smo poiskali v literaturi iz zbirk Medline, Cinahl, UpToDate, Pub Med in z brskalnikom Google učenjak. Vključili smo 36 odraslih bolnikov z zmerno in hudo obliko hemofilije v Sloveniji, starih med 22 in 73 let. Pri raziskovalnem delu smo uporabili dva preverjena anketna vprašalnika, VERITAS-PRO in SF-36. Z VERITAS-PRO smo merili adherenco na zdravljenje v šestih dimenzijah in z SF-36 kvaliteto življenja s 36 trditvami. Pridobljene podatke smo prikazali z deskriptivno statistiko. Rezultati: Adherenca na zdravljenje bolnikov s hemofilijo je na vseh šestih dimenzijah dobra. Najboljša adherentnost se je izkazala pri odmerjanju in najslabša, vendar kljub temu še zmeraj dobra, pri komunikaciji. Le eden izmed anketiranih bolnikov je bil neadherenten, saj je imel število točk nad mejno vrednostjo (57). Bolniki ocenjujejo svojo kvaliteto življenja kot slabo. Mentalno zdravje v povprečju ocenjujejo bolje, kot pa fizično zdravje. Razprava in zaključek: Odrasli bolniki s hemofilijo imajo dobro adherenco na zdravljenje, kljub temu pa kvaliteto življenje v smislu zdravja ocenjujejo kot slabo. Rezultati odstopajo od rezultatov nekaterih drugih študij, kjer so ocene za kvaliteto življenja višje ali nižje. Vsem pa je skupno, da bolniki svojo kvaliteto življenja bolje ocenjujejo v smislu mentalnega zdravja v primerjavi z fizičnim zdravjem. Razlog za slabšo kvaliteto življenja v povezavi z zdravjem bi lahko bil, da v otroštvu niso prejemali ustreznega zdravljenja, saj ga takrat ni bilo. Introduction: Hemophilia is a rare hereditary disease that mainly affects men and is linked to the X chromosome. The result is a lack of coagulation factor VIII or IX and a tendency to bleed. It is divided into hemophilia A and B, and according to the severity of the disease, into mild, moderate and severe forms of hemophilia. It is accompanied by spontaneous bleeding into the joints and muscles. The disease is treated prophylactically or, if necessary, by adding the missing coagulation factor. The most common consequence is hemophilic arthrosis, which is the result of bleeding into the joints. Purpose: We wanted to determine the adherence to treatment of adult patients with hemophilia in Slovenia and their quality of life. In addition, we determined the disease characteristics of hemophilia patients in Slovenia and their lifestyle. Purpose: We wanted to determine the adherence to treatment of adult patients with hemophilia in Slovenia and their quality of life. In addition, we determined the disease characteristics of hemophilia patients in Slovenia and their lifestyle. Methods: The theoretical starting points for the diploma work were searched in the literature from the Medline, Cinahl, UpToDate, Pub Med collections and with the Google Scholar browser. We included 36 adult patients with moderate and severe hemophilia in Slovenia, aged between 22 and 73 years. In the research work, we used two verified questionnaires, VERITAS-PRO and SF-36. With VERITAS-PRO we measured adherence to treatment in six dimensions and with SF-36 quality of life with 36 statements. We presented the obtained data with descriptive statistics. Results: Adherence to the treatment of patients with hemophilia is good on all six dimensions. The best adherence was found in dosing and the worst, but still good, in communication. Only one of the surveyed patients was non-adherent, as he had a score above the threshold value (57). Patients rate their quality of life as poor. On average, mental health is rated better than physical health. Discussion and conclusion: Adult patients with hemophilia have good adherence to treatment, but despite this, they rate the quality of life in terms of health as poor. The results deviate from the results of some other studies, where the scores for the quality of life are higher or lower. What they all have in common is that patients rate their quality of life better in terms of mental health compared to physical health. The reason for the worse quality of life in relation to health could be that they did not receive adequate treatment in childhood, as it did not exist then. |
