Poznavanje rijetkih bolesti

master's thesis

• Title (english): Knowledge of rare diseases
• Author: Petra Jurić-Ćivro
• Mentor: Renata Pinjatela (mentor)
• Committee member: Renata Pinjatela (predsjednik povjerenstva)
• Committee member: Renata Martinec (član povjerenstva)
• Committee member: Damir Miholić (član povjerenstva)
• Granter: University of Zagreb; Faculty of Education and Rehabilitation Sciences; Zagreb
• Defense date and country: 2021-06-30, Croatia
• Scientific / art field, discipline and subdiscipline: SOCIAL SCIENCES; Education/Rehabilitation Sciences

Abstract

Cilj ovog istraživanja bio je dobiti uvid u poznavanje rijetkih bolesti od strane studenata
nekoliko fakulteta Sveučilišta u Zagrebu. Istraživanje je provedeno na uzorku od 100 studenata.
Za potrebe istraživanja, studenti su ispunjavali online anketu na temu poznavanja rijetkih
bolesti. Rezultati dobiveni ovim istraživanjem ukazuju na slabo poznavanje rijetkih bolesti te
ostavljaju prostor za napredak. Iako je 86% studenata čulo za pojam „rijetke bolesti“, njih čak
53% nije znalo samostalno navesti jednu rijetku bolest. Također, pokazali su i slabo poznavanje
različitih rijetkih bolesti. 89% od ukupnog broja studenata nije nikada čulo za buloznu
epidermolizu, 76% za ahondroplaziju, njih 65% nikada nije čulo za osteogenesis imperfectu.
Također, mali postotak studenata je odabrao točan odgovor na pitanja o pojavnosti rijetkih
bolesti (4%), broju rijetkih bolesti (13%), kronološkoj dobi pojavljivanja rijetkih bolesti (28%),
broju oboljelih u svijetu (5%), postotku rijetkih bolesti genetičkog podrijetla (23%), broju
oboljelih u Hrvatskoj (21%) te danu obilježavanja rijetkih bolesti (21%). Nadalje, na pitanje o
nazivu lijekova za liječenje rijetkih bolesti, točno je odgovorilo 10 od ukupnih 100 sudionika
istraživanja. Preporuka za studente su različite radionice, debate, kvizovi te dijeljenje životnih
priča od strane oboljelih sa studentima. Vjerujem kako bi se na ovaj način mlade ljude moglo
potaknuti na promišljanje i učenje o rijetkim bolestima, u svrhu podizanja svijesti šire javnosti
i osiguravanja što veće kvalitete života za oboljele.

Abstract (english)

The aim of this research was to gain insight into the knowledge of rare diseases by students of
several faculties of the University of Zagreb. The research was conducted on a sample of 100
students. For research purposes, students completed an online survey on knowledge of rare
diseases. The results obtained by this research indicate a poor knowledge of rare diseases and
leave room for improvement. Although 86% of students had heard of the term "rare diseases",
53% did not know how to name one rare disease on their own. They also showed poor
knowledge of various rare diseases. 89% of the total number of students have never heard of
bullous epidermolysis, 76% of achondroplasia, 65% of them have never heard of osteogenesis
imperfecta. Also, a small percentage of students chose the correct answer to questions about
the incidence of rare diseases (4%), the number of rare diseases (13%), the chronological age
of occurrence of rare diseases (28%), the number of patients worldwide (5%), the percentage
of rare diseases genetic origin (23%), the number of patients in Croatia (21%) and the
marking day of rare diseases (21%). Furthermore, when asked about the name of drugs for the
treatment of rare diseases, 10 out of 100 study participants answered correctly.
Recommendations for students are various workshops, debates, quizzes and sharing life
stories by patients with students. I believe that this way young people could be encouraged to
think more and learn about rare diseases, in order to raise awareness of the general public and
ensure the best possible quality of life for the sick.

• Keywords: rijetke bolesti; podizanje svijesti; kvaliteta života
• Keywords (english): rare diseases; awareness raising; quality of life
• Language: croatian
• URN:NBN: urn:nbn:hr:158:335060
• Study programme: Title: Graduate study of Educational Rehabilitation; Study programme type: university; Study level: graduate; Academic / professional title: magistar/magistra edukacijske rehabilitacije (magistar/magistra edukacijske rehabilitacije)
• Type of resource: Text
• File origin: Born digital
• Access conditions: Open access; Embargo expiration date: 2021-12-30
• Created on: 2021-11-14 10:58:21