ovdje - Hrvatsko filozofsko društvo
ovdje - Hrvatsko filozofsko društvo
ovdje - Hrvatsko filozofsko društvo
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u Srbiji. U ovom je istraživanju korištena studija presjeka za anketiranje<br />
pacijenata. Poseban je upitnik popunilo 60 pacijenata. Pacijenti smatraju<br />
da je vrlo važno baviti se ovim pitanjem u našoj zemlji, kao i da je položaj<br />
oboljelih prilično težak. Ispitanici se slažu da su najveći problemi oboljelih:<br />
nedovoljna informiranost javnosti, visoke cijene lijekova i komplicirane<br />
procedure njihova nabavljanja. Naši ispitanici smatraju da se farmakoterapija<br />
rijetkih bolesti može unaprijediti: pravovremenom dijagnostikom, pojednostavljivanjem<br />
procedura nabavljanja lijekova i registriranjem većeg<br />
broja lijekova. Potrebno je unaprijediti informiranost pacijenata o farmakoterapiji<br />
rijetkih bolesti i potaknuti ih na organiziranje vlastitih udruženja<br />
koja bi se zalagala za poboljšanje njihovog položaja u našoj sredini.<br />
BIOETHICAL ASPECTS OF PHARMACOTHERAPY OF<br />
RARE DISEASES IN NEUROLOGY:<br />
WHAT DO PATIENTS THINK ABOUT IT?<br />
Pharmacotherapy of rare diseases in neurology is faced with many<br />
ethical dilemmas. The diseases are often life-threatening and progressive<br />
and the treatment is very expensive. We aimed to assess knowledge and<br />
attitudes of neurological patients towards the issue of treatment of rare<br />
diseases in Serbia. Patients were questioned in the cross-section study. A<br />
self-completed questionnaire was delivered to 60 patients. Patients considered<br />
that dealing with this issue in our country is extremely important<br />
and that situation of patients is difficult. Our participants agreed that the<br />
biggest problems are lack of public information, high price of drugs and<br />
complicated procedures for their procurement. In order to improve pharmacotherapy<br />
of rare diseases participants suggested several options such<br />
as well-timed diagnostics, simplified procedures for procurement of drugs<br />
and registration of bigger number of drugs. In conclusion, it is necessary<br />
to improve knowledge of patients towards the issues of pharmacotherapy<br />
of rare diseases and support them to form their own association to improve<br />
their situation in our community.<br />
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