Quality of life of children and adolescents with cystic fibrosis

Layanna Thomaz Lima da Silva, Bruna Hinnah Borges Martins de Freitas, Joerko Campos de Deus, Juliano Bortolini

Abstract


ABSTRACT

Objective: to evaluate the health-related quality of life (HRQoL) of children and adolescents with cystic fibrosis. Method: this is a quantitative and cross-sectional study with children and adolescents. Data was collected in the outpatient clinic weekly with the DISABKIDS® instrument from the perspective of individuals (Self) and their parents or caregivers (Proxy). Statistical analysis was performed using descriptive techniques in SPSS 20 software, and frequency tables were constructed. Results: the sample was constituted by 11 subjects. It was recorded that the majority (63.6%) of the companions were mothers with a mean age of 41 years. In the Impact dimension, Self showed an average of 66.4 and, in Proxy, 69.5; however, in the treatment dimension, by the Self version, we obtained an average of 72.4 and, by Proxy, 66.9. The majority of patients with good clinical status (45.4%) were classified according to the Shwachman-Kulczyki score. Conclusion: it is concluded that children and adolescents perceive a better HRQoL on treatment and a worse HRQoL on the impact of the disease, when compared to their parents/caregivers. Descriptors: Cystic Fibrosis; Chronic disease; Quality of life; Health Care; Child; Teenager.

RESUMO

Objetivo: avaliar a qualidade de vida relacionada à saúde (QVRS) de crianças e adolescentes com fibrose cística. Método: trata-se de um estudo quantitativo e transversal, realizado com crianças e adolescentes. Coletaram-se os dados no ambulatório semanalmente com o instrumento DISABKIDS® na perspectiva dos indivíduos (Self) e dos seus pais ou cuidadores (Proxy). Realizou-se a análise estatística por técnicas descritivas no software SPSS 20, sendo construídas tabelas de frequências. Resultados: constituiu-se a amostra por 11 sujeitos. Registrou-se que a maioria (63,6%) dos acompanhantes era de mães com idade média de 41 anos. Apontaram-se, na dimensão impacto, pela Self, uma média de 66,4 e, na Proxy, de 69,5; entretanto, na dimensão tratamento, pela versão Self, obteve-se uma média de 72,4 e, pela Proxy, de 66,9. Classificou-se a maioria dos pacientes com boa condição clínica (45,4%) de acordo com o escore de Shwachman-Kulczyki. Conclusão: conclui-se que as crianças e adolescentes percebem uma melhor QVRS quanto ao tratamento e uma pior QVRS quanto ao impacto da doença, quando comparados aos seus pais/cuidadores. Descritores: Fibrose Cística; Doença Crônica; Qualidade de Vida; Atenção à Saúde; Criança; Adolescente.

RESUMEN

Objetivo: evaluar la calidad de vida relacionada con la salud (QVRS) de niños y adolescentes con fibrosis quística. Método: se trata de un estudio cuantitativo y transversal, realizado con niños y adolescentes. Se recogieron los datos en el ambulatorio semanalmente con el instrumento DISABKIDS® en la perspectiva de los individuos (Self) y de sus padres o cuidadores (Proxy). Se realizó el análisis estadístico por técnicas descriptivas en el software SPSS 20, siendo construidas tablas de frecuencias. Resultados: se constituyó la muestra por 11 sujetos. Se registró que la mayoría (63,6%) de los acompañantes era de madres con edad promedio de 41 años. Se apunta, en la dimensión impacto, por el Self, una media de 66,4 y, en la Proxy, de 69,5; sin embargo, en la dimensión tratamiento, por la versión Self, se obtuvo un promedio de 72,4 y, por Proxy, de 66,9. Se clasificó la mayoría de los pacientes con buena condición clínica (45,4%) de acuerdo con la puntuación de Shwachman-Kulczyki. Conclusión: se concluye que los niños y adolescentes perciben una mejor QVRS en cuanto al tratamiento y una peor QVRS en cuanto al impacto de la enfermedad, cuando comparados a sus padres / cuidadores. Descriptores: Fibrosis Quística; Enfermedad Crónica; Calidad de Vida; Atención a la Salud; Niño; Adolescente.


Keywords


: Fibrose Cística; Doença Crônica; Qualidade de Vida; Atenção à Saúde; Criança; Adolescente.

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DOI: https://doi.org/10.5205/1981-8963-v13i3a236410p551-559-2019



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