Evaluacija kvaliteta života dece i adolescenata sa cerebralnom paralizom u Republici Srbiji

Abstract

U radu su prikazani rezultati pilot studije čiji je cilj bio da se ispitaju mogućnosti primene Upitnika o kvalitetu života u vezi sa zdravljem (HRQOL) za decu i mlade – KIDSCREEN-10 (Verzije za roditelje) u istraživačke svrhe u populaciji osoba sa cerebralnom paralizom (CP) u Republici Srbiji. Ukupno je bilo uključeno 112 roditelja dece i mladih starosti od osam do 18 godina. Prvu grupu je činilo 47 roditelja dece i mladih sa CP, prosečnog uzrasta 13,06 godina (SD 2,75), a kontrolnu 65 roditelja dece i mladih tipičnog razvoja, prosečnog uzrasta 12,11 godina (SD 2,65). Grupe su bile ujednačene prema polu i uzrastu dece. Utvrđene vrednosti Kronbahovog α koeficijenta od 0,729 u grupi ispitanika sa CP, odnosno 0,752 u kontrolnoj grupi, ukazuju da je dobijena prihvatljiva, ali niža interna konzistentnost u poređenju sa vrednostima dobijenim u originalnom internacionalnom (α=0,78) i nacionalnom normativnom uzorku (α=0,76). Man-Vitnijev U test je otkrio statistički značajnu razliku stepena HRQOL između grupa (U=685,0, z=-4,978, p<0,001, r=0,47). Tačnije, roditelji dece i mladih sa CP procenjuju kvalitet života svoje dece kao niži (Mdn=41,71) u poređenju sa roditeljima dece i mladih tipičnog razvoja (Mdn=52,65). Pored toga, u grupi roditelja dece i mladih sa CP je uočena statistička značajnost razlike rezultata u odnosu na informanta (χ2=8,969, df=2, p=0,011). Naknadna poređenja su pokazala da je stepen HRQOL bio statistički značajno viši (U=7,500, z=-2,834, p=0,005) ukoliko su majke vršile procenu (Mdn=44,96) u poređenju sa očevima (Mdn=34,09), uz srednju jačinu uticaja razlike (r=0,48). KIDSCREEN-10 (Verzija za roditelje) ima dobre potencijale za primenu u istraživačke svrhe u populaciji osoba sa CP. Potrebno je ponoviti istraživanje na većem uzorku, obuhvatiti širi spektar sociodemografskih faktora, ispitati psihometrijske karakteristike, kao i mogućnosti primene u kliničkoj praksi.

This paper presents the results of a pilot study aimed to examine the possibilities of application of the KIDSCREEN-10 Health Related Quality of Life Questionnaire (HRQOL) for Children and Young People (Parent Version) in research purposes in the population of persons with cerebral palsy (CP) in the Republic of Serbia. A total of 112 parents of children and youth aged from eight to 18 years were included. The first group consisted of 47 parents of children and youth with CP, mean age of 13.06 years (SD 2.75). Control group consisted of 65 parents of children and youth of typical development, mean age of 12.11 years (SD 2.65). There were no statistical significances between these groups according to both gender and age of children. Obtained values of Cronbach’s alpha coefficient (0.729 in group of participants with CP and 0.752 in control group) indicate that internal consistency is acceptable, but slightly lower when compared to the values obtained previously in both original international (α=0.78) and national normative samples (α=0.76). Man-Whitney U test revealed a statistically significant difference in HRQOL level between two groups (U=685.0, z=-4.978, p<0.001, r=0.47). More specifically, group of parents of children and youth with CP assessed quality of life of their children as lower (Mdn=41.71) in comparison to parents of children and youth of typical development (Mdn = 52.65). On the other hand, a statistically significant difference of the results in relation to informant was noticed in the group of parents of children and youth with CP (χ2=8.969, df=2, p=0.011). Subsequent comparisons showed that HRQOL level was statistically significantly higher (U=7.500, z=-2.834, p=0.005) when mothers were informants (Mdn=44.96) compared with fathers (Mdn = 34.09), with a medium effect size value (r=0.48). KIDSCREEN-10 (Parent Version) has a good potential for use in research purposes in the population of persons with CP. It is necessary to repeat the study on a larger sample, to include a wider range of socio-demographic factors, to examine psychometric properties, and possibilities of implementation in clinical practice.