Tranzicija bolesnika s cističnom fibrozom iz pedijatrijske u adultnu medicinsku skrb

master's thesis

• Title (english): Transition of patients with cystic fibrosis from pediatric to adult health care
• Author: Valentina Pongračić
• Mentor: Dorian Tješić-Drinković (mentor)
• Committee member: Ernest Bilić (predsjednik povjerenstva)
• Committee member: Marija Jelušić (član povjerenstva)
• Committee member: Dorian Tješić-Drinković (član povjerenstva)
• Granter: University of Zagreb; School of Medicine; (Department of Pediatrics); Zagreb
• Defense date and country: 2020-07-17, Croatia
• Scientific / art field, discipline and subdiscipline: BIOMEDICINE AND HEALTHCARE; Clinical Medical Sciences; Pediatrics

Abstract

Zahvaljujući novim otkrićima u medicini i njihovoj implementaciji u svakodnevnoj praksi, osobe čije su bolesti nekada bile ograničene na dječju dob odrastaju i postaju internistički pacijenti, odnosno događa se tranzicija unutar zdravstvenog sustava. Tranzicija ne bi smjela biti jednokratan događaj već osmišljen, planiran i sveobuhvatan proces u kojem adolescent postupno usvaja znanja o svojoj bolesti, vještine u primjeni terapije, uči proaktivan pristup u očuvanju zdravlja te preuzima odgovornost o sferi koja je dotada bila u rukama roditelja. Cistična fibroza jedna je od bolesti za koju je bitan razvoj tranzicijske medicine. Riječ je o autosomno recesivnoj, nasljednoj, multisistemskoj bolesti progresivnog tijeka koja počinje in utero i napreduje po rođenju. Medijan pretpostavljenog trajanja života danas rođenih bolesnika je oko 50 godina. Broj komplikacija i zahvaćenost raznih organskih sustava raste s dobi bolesnika. Bolest je rijetka, obilježena izrazito varijabilnim kliničkim tijekom i ekspresijom bolesti. Stoga je optimalno da se bolesnici liječe u specijaliziranim centrima koji okupljaju multidisciplinarni tim stručnjaka s posebnim interesom za ovu bolest, što jamči sveobuhvatnu skrb. I u Hrvatskoj od 2017. godine postoji Centar za cističnu fibrozu djece i odraslih koji djeluje u sklopu Kliničkog bolničkog centra Zagreb. Prema podatcima iz 2017. godine u njemu se liječi 93 bolesnika, od čega je 41 (45%) u odrasloj dobi. Tranzicija bolesnika organizirana je prema modelu fokusiranom na bolesnika, kao osmišljeni i planirani kontinuirani proces. Članovi multidisciplinarnog tima upoznaju se sa specifičnostima svakog bolesnika još tijekom djetinjstva i adolescencije, a u prikladno vrijeme i susreću bolesnika. Optimalan trenutak za čin prijelaza u adultnu skrb određuje se konsenzusom stručnjaka iz Centra uzimajući u obzir osobine bolesnika i stadij bolesti. Tako se osigurava neopterećen transfer i kontinuitet liječenja po istim standardima, što je cilj sveobuhvatne i dobro osmišljene, strukturirane tranzicije.

Abstract (english)

Regarding the new discoveries in medicine and their implementation in daily practice, people whose illnesses were once confined to childhood, grow up and are treated by internal medicine specialists. Transition to adult care shouldn't be a one-time event. It should be a planned and comprehensive process in which the adolescent gradually learns about his illness, gains skills in therapy, learns how to be proactive in maintaining a healthy lifestyle and fully takes over the responsibility that was in the hands of the parents. Cystic fibrosis is one of the illnesses where the transition from pediatric to adult health care is essential. It is an autosomal recessive hereditary multisystemic illness of progressive course that begins in utero and progresses after birth. Median predicted age of survival of patients born today is about 50 years. The number of complications and involvement of various organ systems increases with the age of the patient. The disease is rare, characterized by a highly variable clinical course and expression of the disease. Therefore, optimal treatment for these patients is provided in specialized centers that bring together a multidisciplinary team of health care providers with a special interest in this disease, which guarantees comprehensive care. Such a center exists in Croatia, since 2017: the Cystic Fibrosis Center for Children and Adults that operates within the University Hospital Centre Zagreb. According to data from 2017, it takes care of 93 patients, 41 (45%) of which are adults. Transition to adult care is organized according to a patient-focused model as a planned and continuous process. Members of the multidisciplinary team get acquainted with the specifics of each patient during childhood and adolescence and at the appropriate time meet the patient. The optimal time for the act of transfer to adult care is determined by the consensus of experts from the Center, considering the characteristics of the patient and stage of disease. This ensures a smooth transfer and continuous treatment following the same standards, which is the goal of a comprehensive and well-designed, structured transition to adult care.

• Keywords: tranzicijska medicina; cistična fibroza; multidisciplinarni tim; centar za cističnu fibrozu
• Keywords (english): transitional medicine; cystic fibrosis; multidisciplinary team; cystic fibrosis center
• Language: croatian
• URN:NBN: urn:nbn:hr:105:510279
• Study programme: Title: Medicine; Study programme type: university; Study level: integrated undergraduate and graduate; Academic / professional title: doktor/doktorica medicine (doktor/doktorica medicine)
• Type of resource: Text
• File origin: Born digital
• Access conditions: Open access
• Created on: 2021-05-10 08:29:54