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Please use this identifier to cite or link to this item: http://tede2.pucgoias.edu.br:8080/handle/tede/4451
Tipo do documento: Dissertação
Título: Qualidade de vida de adolescentes com paralisia cerebral: relato do adolescente e do cuidador
Título(s) alternativo(s): Quality of life of adolescents with cerebral palsy: report of the adolescent and the caregiver
Autor: Ferreira, Mariana Ceravolo 
Primeiro orientador: Ribeiro, Maysa Ferreira Martins
Primeiro membro da banca: Barbosa , Maria Alves
Resumo: Dissertação construída na modalidade alternativa, composta por dois artigos: 1) “Qualidade de vida de adolescentes com paralisia cerebral: concordância entre o relato do adolescente e do cuidador”; 2) “Correlação entre fadiga e qualidade de vida autorrelatadas por adolescentes com paralisia cerebral”. Os objetivos foram avaliar a qualidade de vida (QV) de adolescentes com paralisia cerebral (PC) pelo autorrelato e do relato do cuidador; analisar a concordância entre a avaliação da QV autorrelatada por adolescentes com PC com aquela relatada pelos cuidadores; comparar os escores de fadiga e QV entre as categorias das variáveis sexo, faixa etária, acometimento motor, Gross Motor Function Classification System (GMFCS) e frequentar a escola; investigar a correlação entre fadiga e QV autorrelatadas por adolescentes com PC. Trata-se de um estudo transversal, realizado de março a agosto de 2017 em todas as instituições públicas de reabilitação neurológica do município de Goiânia, Goiás. A amostra foi composta por 101 adolescentes com PC (10 a 19 anos) e 101 cuidadores. A QV dos adolescentes foi avaliada pelo Pediatric Quality of Life Inventory (PedsQL), módulo genérico e de PC, respondido pelos adolescentes e pelos cuidadores. A fadiga foi mensurada pelo PedsQL módulo de Escala multidimensional do cansaço, respondida apenas pelos adolescentes. A função motora dos adolescentes foi avaliada pelos pesquisadores usando o GMFCS. A concordância entre o relato dos adolescentes e dos cuidadores foi analisada pelo teste de Mann-Whitney e pelo coeficiente de correlação intra classe (ICC) aleatório de uma via. Os dados sociodemográficos e clínicos foram comparados com os escores do PedsQL pelo teste de Mann-Whitney e a correlação entre fadiga e QV foi investigada pelo teste de Spearman (p
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.
Palavras-chave: Qualidade de Vida; Qualidade de Vida Relacionada à Saúde; Paralisia Cerebral; Adolescente; Cuidadores.
Quality of Life; Health-Related Quality of Life; Cerebral palsy; Adolescent; Carregivers.
Área(s) do CNPq: Ciências da Saúde
Idioma: por
País: Brasil
Instituição: Pontifícia Universidade Católica de Goiás
Sigla da instituição: PUC Goiás
Departamento: Escola de Ciências Médicas, Famacêuticas e Biomédicas::Curso de Biomedicina
Programa: Programa de Pós-Graduação STRICTO SENSU em Atenção à Saúde
Citação: Ferreira, Mariana Ceravolo. Qualidade de vida de adolescentes com paralisia cerebral: relato do adolescente e do cuidador. 2018. 141 fls. Dissertação( Programa de Pós-Graduação STRICTO SENSU em Atenção à Saúde) - Pontifícia Universidade Católica de Goiás, Goiânia.
Tipo de acesso: Acesso Restrito
URI: http://tede2.pucgoias.edu.br:8080/handle/tede/4451
Data de defesa: 6-Dec-2018
Appears in Collections:Mestrado em Atenção à Saúde

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