| Abstract | Rijetke bolesti prema definiciji su bolesti koje se javljaju na manje od 5 pojedinaca na
10 000 stanovnika. Iako rijetke, kad se uzme u obzir veliki broj rijetkih bolesti, dolazimo do
podataka da u Europi od rijetkih bolesti boluje oko 6 do 8% cjelokupne populacije. Zbog svoje
kompleksnosti, rijetke bolesti zahtijevaju multidisciplinarnu, integriranu, kontinuiranu i
cjelovitu skrb. Danas, zahvaljujući znanstvenom i tehnološkom razvoju medicina svakodnevno
napreduje, rijetke bolesti se sve bolje tretiraju, životni vijek pacijenata se produžuje, a kvaliteta
života se unaprjeđuje. Uloga medicinske sestre u skrbi za oboljele važna je jer je medicinska
sestra ona koja kao dio multidisciplinarnog tima koordinira skrb. Ona je zadužena za edukaciju
oboljelih te planiranje intervencije koje su potrebne kako bi se identificirale potrebe i poteškoće
koje se tijekom skrbi mogu javiti. U Europi se sve više govori o potrebi za pružanjem
integrirane skrbi kao pojmu koji odražava problem u poboljšanju pacijentovog iskustva i
postizanju efikasnosti u pružanju usluga u zdravstvu, a sve kako bi skrb bila dobro koordinirana
i kontinuirana. U tom kontekstu govori se o medicinskoj sestri kao o „case manageru“. U ovom
radu po prvi put spominju se „case manageri za rijetke bolesti“ po primjeru dobrih praksi
drugih država kao i preporuke za sveobuhvatnu i holističku skrb Europske organizacije za
rijetke bolesti. Korištenje „case managementa“ u radu s oboljelima omogućio bi veliki
napredak skrbi, a također doveo je do povećanja kvalitete života što je za oboljele, njihove
obitelji, ali i zdravstvene djelatnike te sve druge sudionike u skrbi i najvažnije. |
| Abstract (english) | Rare diseases by definition are diseases that affect less than 5 individuals per 10,000
population. Although rare, when a large number of rare diseases are taken into account, we
come to the data that in Europe about 6 to 8% of the total population suffers from rare diseases.
Due to their complexity, rare diseases require multidisciplinary, integrated, continuous and
holistic care. Today, thanks to scientific and technological developments, medicine is
advancing on a daily basis, rare diseases are being treated better, patients' life expectancy is
being extended, and their quality of life is improving. The role of the nurse in caring for people
with rare disease is important because it is the nurse who, as part of a multidisciplinary team,
coordinates care. Nurse is in charge of educating people with rare disease and planning the
interventions needed to identify the needs and difficulties that may arise during care. In Europe,
there is increasing talk of the need to provide integrated care as a concept that reflects the
problem of improving the patient experience and achieving efficiency in the provision of health
services, all in order for care to be well coordinated and continuous. In this context, the nurse
is referred to as a "case manager". This master thesis mentions for the first time "case managers
for rare diseases" following the example of good practices of other countries as well as
recommendations for comprehensive and holistic care of the Rare Diseases Europe. The use of
"case management" in working with patients would enable great progress in care, and also led
to an increase in the quality of life, which is most important for patients, their families, but also
health professionals and all other participants in care. |
