Novi pristup procjeni stanja bolesti u djece s juvenilnim dermatomiozitisom

master's thesis

• Title (english): New approach to disease assessment in children suffering from juvenile dermatomyosities
• Author: Iva Vukšić
• Mentor: Marija Jelušić (mentor)
• Committee member: Danko Milošević (predsjednik povjerenstva)
• Committee member: Jurica Vuković (član povjerenstva)
• Committee member: Marija Jelušić (član povjerenstva)
• Granter: University of Zagreb; School of Medicine; (Department of Pediatrics); Zagreb
• Defense date and country: 2014-07-15, Croatia
• Scientific / art field, discipline and subdiscipline: BIOMEDICINE AND HEALTHCARE; Clinical Medical Sciences; Pediatrics

Abstract

UVOD: Juvenilni Dermatomiozitis (JDM) je najčešći idiopatski upalni miozitis u djece, može biti uzrokom dugoročnog morbiditeta te tako utjecati na djetetov razvoj i kvalitetu života. Posljednjih godina porastao je interes da se uz liječnikovo praćenje kliničkog tijeka bolesti, odabira terapijskih postupaka i ocjene mogućih ograničenja i kvalitete života, uključe bolesnici i njihovi roditelji putem upitnika PRO (parent/patient – reported outcomes). Nedavno je razvijen novi multidimenzijski upitnik JDMAR (Juvenile Dermatomyositis Multidimensional Assessment Report) za praćenje i procjenu zdravstvenog stanja djece s JDM, koji obuhvaća većinu dosada razvijenih PRO.
CILJ: Doprinijeti daljnjoj procjeni validnosti JDMAR upitnika, ispitati njegovu pouzdanost i primjenjivost u redovitoj kliničkoj praksi.
ISPITANICI I METODE: U istraživanje su uključena djeca s dijagnozom juvenilnog dermatomiozitisa koja su liječena u Klinici za pedijatriju, Zavodu za imunologiju i reumatologiju, KBC Zagreb, u razdoblju od 2012. do 2013. godine. Analizirali smo 18 JDMAR upitnika i 18 standardnih liječničkih obrazaca.
REZULTATI: JDMAR upitnik kojeg ispunjava bolesnik ili njegov roditelj daje pouzdane podatke i ne razlikuje se puno od liječnikove objektivne procjene stanja bolesti u vrijeme posjeta i tijeka bolesti od zadnje posjete. Upitnik je pokazao kako postoji značajna razlika između liječnikove i bolesnikove procjene aktivnosti bolesti.
ZAKLJUČAK: JDMAR upitnik daje objektivno zadovoljavajuće podatke o stanju i tijeku bolesti. Postojeće nepodudarnosti između liječnikove i bolesnikove procjene pojedinih parametara ukazuju na potrebu dodatnog poboljšanja forme upitnika i usklađenosti ocjene pojedinih stanja od strane liječnika i ispitanika.

Abstract (english)

INTRODUCTION: Juvenile Dermatomyositis (JDM) is the most common idiopathic inflammatory myopathy of childhood, it can be significant cause of long-term morbidity and it affects the childs development and quality of life. In recent years, there has been an increasing interest in parent/patient–reported outcomes (PRO) and involvement in the physicians monitoring of clinical course of disease, selection of therapeutic procedures, assessment of possible limitations and quality of life. Scientists recently developed a new multidimensional questionnaire JDMAR (Juvenile Dermatomyositis Assessment Report) for monitoring and assessing the health status in children with JDM that includes all main PRO.
AIM: We want to contribute to further assessment of the JDMAR questionnaire validity and to examine its reliability and applicability in regular clinical practice.
SUBJECTS AND METHODS: The study included children diagnosed with juvenile dermatomyositis who were treated at the Department of Pediatrics, Division of Immunology and Rheumatology, University Hospital Center Zagreb, in the period from 2012 to 2013. We analyzed 18 questionnaires and 18 standard medical forms.
RESULTS: JDMAR completed by the patient or his parent provides reliable informations and doesn't differ from the doctor's objective assessment of disease status at the time of visit and disease progress since last visit. There was a significant difference between doctor's and patient's assessment of disease activity.
CONCLUSION: JDMAR provides sufficient objective informations about disease status and disease progress. However, current value of disimilarities between the physician's and patient's evaluation of certain parameters, indicate a need for further improvement of the form of the qustionnaire as well as compatibility between the assessment of certain conditions by doctors and patients.

• Keywords: juvenilni dermatomiozitis
• Keywords (english): juvenile dermatomyositis
• Language: croatian
• URN:NBN: urn:nbn:hr:105:946218
• 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: 2015-10-20 16:01:01