Avtor/Urednik		Volčini, Lara; Šuc, Lea; Groleger Sršen, Katja
Naslov		Uporaba vprašalnika za oceno kakovosti življenja pri otrocih s cerebralno paralizo
Prevedeni naslov		Use of the quality of life questionnaire in children with cerebral palsy
Tip		članek
Vol. in št.		Letnik 20, št. 1
Leto izdaje		2021
Obseg		str. 52-61
ISSN		1580-9315 - Rehabilitacija
Jezik		slv
Abstrakt		Izhodišča: Zmanjšane zmožnosti gibanja in druge težave pri otroku s cerebralno paralizo (CP) lahko vplivajo na kakovost njegovega življenja. V Sloveniji je bila do sedaj opravljena le ena obširnejša raziskava na tem področju. Želeli smo poiskati enostaven test za oceno kakovosti življenja otrok s CP, ki je dostopen brezplačno in nato preveriti njegovo klinično uporabo pri majhni skupini otrok. Ugotoviti smo želeli tudi, ali se ocene kakovosti življenja otrok in njihovih staršev razlikujejo. Metode: Po prevodu Vprašalnika za ocenjevanje kakovosti življenja otrok s CP (angl. The Cerebral Palsy Quality of Life-Child, CP QOL- -Child) smo v raziskavo povabili otroke s CP, ki so bili vključeni v program rehabilitacije na Univerzitetnem rehabilitacijskem inštitutu Republike Slovenije ter njihove starše. Izpolnili so različico vprašalnika CP QOL-Child za otroke, oz. za starše. Rezultati: Vključili smo 10 otrok v starosti od devet do 12 let in njihove starše. Otroci so kakovost svojega življenja ocenili kot dobro, večinoma pa višje kot njihovi starši. Ocene kakovosti življenja so bile višje pri otrocih, ki imajo manj težav na področju grobega gibanja. Starši so kakovost življenja v primerjavi z otroki ocenili višje pri tistih, ki so imeli manj težav pri grobem gibanju. Zaključek: Rezultati pilotske raziskave kažejo, da je slovenski prevod vprašalnika CP QOL-Child za otroke in starše uporaben v klinični praksi. Pred nadaljnjo uporabo bi morali oceniti njegove psihometrične lastnosti v raziskavi z večjim številom otrok s cerebralno paralizo.Background: Impaired gross motor function and other problems of a child with cerebral palsy (CP) can influence his/her quality of life. Only one broader study on the possible impact of CP on health related quality of life (HRQoL) has been run in Slovenia. We wanted to analyse what impact cerebral palsy has on a child%s quality of life. We wanted to find a simple, free-of-charge HRQoL test for children with CP and check its clinical use in a small group of children. We also wanted to find if HRQoL evaluation scores differ among children and their parents. Methods: After the translation of the Cerebral Palsy Quality of Life-Child questionnaire (CP QOL-Child) into Slovene language, we invited children and their parents who were referred to the rehabilitation program at the University Rehabilitation Institute of the Republic Slovenia. They filled in the CP QOL-Child self-report version for children or primary caregiver version. Results: We included 10 children (aged from nine to 12 years) and their parents. Children and their parents rated their quality of life as good. A fair share of parents rated the quality of life lower in comparison with their children, especially parents of children with lower gross motor function. Children with higher gross motor function scored their HRQoL higher in comparison to children with lover gross motor function. Conclusion: Slovenian translation of the CP QOL-Child questionnaire is useful in clinical practice. Before its further use, psychometric properties should be assessed in a larger number of children with cerebral palsy.
Deskriptorji		Cerebral Palsy Child rehabilitation rehabilitation
Proste vsebinske oznake		vprašalnik cerebralna paraliza otrok družina kakovost življenja questionnaire cerebral palsy child family quality of life