Avtor/Urednik		Jakl, Dominika; Pajnkihar, Majda
Naslov		Merjenje z zdravjem povezane kakovosti življenja pri multipli sklerozi
Prevedeni naslov		Measuring health-related quality of life in multiple sclerosis
Tip		članek
Vir		74232321
Leto izdaje		2013
Obseg		str. 159-163
Jezik		slv
Abstrakt		Izhodišča: Merjenje z zdravjem povezane kakovosti življenja je pomemben element obravnave kroničnih bolezni kot je multipla skleroza. Merimo jo s splošnimi in specifičnimi vprašalniki. Slednji podajo bolj edinstvene in koristne informacije o posameznikovem dojemanju bolezni in zdravljenja, zato smo s pregledom literature želeli dobiti vpogled v njihov namen in uporabnost.Metode: Pregled literature je bil izveden z deskriptivno metodo. Iskanje je potekalo marca 2013 v iskalnem sistemu PubMed in podatkovni zbirki EBSCOhost s pomočjo ključnih besed: quality of life, health-related quality oflife, measurement, instruments, scale, multiple sclerosis. Iskanje je bilo omejeno na objave člankov v angleškem jeziku. Rezultati: Pri pregledu literature je bilo najdenih 31 specifičnih vprašalnikov na temo z zdravjem povezane kakovosti življenja pri multipli sklerozi, namenjenih raziskovanju inpraksi, obolelim in njihovim negovalcem. Diskusija in zaključek: Vprašalnikise med seboj razlikujejo po obsegu, dimenzijah posameznikovega življenja, času izpolnjevanja, razlike so tudi v veljavnosti in zanesljivosti teh instrumentov. Zaradi nekaterih slabosti je njihova uporaba v praksi manjša, vseeno pa gre razmisliti o njihovi uporabi, saj lahko služijo tudi kotevalvacijsko orodje. Pred uporabo je vprašalnike potrebno ustrezno lokalizirati, opredeliti pa moramo tudi njihovo uporabno vrednost.Introduction: Measuring of health-related quality of life is an important component in chronic diseases treatment such as multiple sclerosis. There are generic and diseasespecific measures. Disease-specific measures provide more unique, relevant and comprehensive information about impact of disease and treatment on the individual. With a literature review we try to examine their purpose and use. Methods: We conducted a literature review using descriptive method. Data collection was carried out in March 2013 in PubMed and EBSCOhost using the search terms: quality of life, health-related quality of life, measurement, instruments, scale, and multiple sclerosis. The search was limited to relevant English articles. Results: We identified 31 measures to assess healthrelated quality of life in people with multiple sclerosis and caregivers addressed either for research or use in practice. Discussion and conclusion: Questionnaires differ in several ways, including different domainsof life, the extent and time required for completion, reliability, and validity. The actual adoption of measures remains low in clinical practice dueto their deficiencies. But still the use should be considered because instruments can also be used as evaluation tools. Questionnaires require adaptation called localization and determination of their value.
Proste vsebinske oznake		merjenje specifični vprašalniki kronična bolezen measurement disease-specific measures chronic disease