Qualidade de vida de adolescentes com paralisia cerebral: relato do adolescente e do cuidador

Abstract

Dissertation constructed in the alternative modality, composed of two articles: 1) "Quality of life of adolescents with cerebral palsy: agreement between the adolescent and the caregiver's report"; 2) "Correlation between fatigue and self-reported quality of life by adolescents with cerebral palsy". The objectives were to evaluate the quality of life (QoL) of adolescents with cerebral palsy (PC) by the self-report and the caregiver's report; to analyze the agreement between the assessment of selfreported QOL by adolescents with CP and that reported by caregivers; compare fatigue and QOL scores among the categories of variables gender, age, motor impairment, Gross Motor Function Classification System (GMFCS) and attend school; to investigate the correlation between fatigue and self-reported QOL by adolescents with CP. This is a cross-sectional study, carried out from March to August 2017 in all public neurological rehabilitation institutions in the city of Goiânia, Goiás. The sample was made by 101 adolescents with CP (10 to 19 years) and 101 caregivers. The QoL of the adolescents was evaluated by the Pediatric Quality of Life Inventory (PedsQL), a generic and PC module, answered by adolescents and caregivers. Fatigue was measured by the PedsQL module of Multidimensional Scale of fatigue, answered only by adolescents. The motor function of adolescents was evaluated by researchers using GMFCS. Adherence among adolescents and caregivers was analyzed by the Mann-Whitney test and the one-way random intraclass correlation coefficient (ICC). The sociodemographic and statistical data were compared with the PedsQL scores by the Mann-Whitney test and the fatigue and QV scores were investigated by the Spearman test (p <0.05). The mean age was 14 years and 10 months (SD 2 years and 10 months). Participants included more male adolescents (57.4%) and GMFCS levels I, II and III (77.2%). In PEDSQL 4.0, there are no adolescents and caregivers, nor the physical health score is lower, 53.1 and 34.3 respectively. In PedsQL 3.0, minors are not related to children in "school activities" (56.2) and "fatigue" (56.2). However, none of those responsible for activities was the domain with the lowest score (47.2). There was a variation of mean (p <0.05) between the reports in PedsQL 4.0, total score and physical health, and not in the domain "everyday activities", "school activities" and "movement and balance" in PedsQL 3.0. In both instruments the caregivers report was less optimistic, with children scores. Agreement between countries was poor (ICC <0.44). Older adolescents are more fatigued (50.0) and worse QV in children's health (56.2), 'psychosocial health' (56.6) and 'total score' (55.9). Those who did not attend school and had the highest motor-compromised QOL scores. Higher fatigue level was correlated in lower QoL in all domains (p <0.01). In the evaluation of QoL, health health fitness was one of the most affected and weakest concordances between the adolescent and the caregiver. Fatigue and QoL are related constructs in all domains, mainly general fatigue and psychosocial health.