Dados do Trabalho

Título

HEALTH-RELATED QUALITY OF LIFE IN CHILDREN WITH CEREBRAL PALSY ASSOCIATED WITH CONGENITAL ZIKA INFECTION

Introdução

Six years ago, Brazil faced an unprecedented Zika virus (ZIKV) epidemic, followed by the emergence of a new nosological category diagnosis: congenital Zika syndrome (CZS). CZS encompasses the spectrum of symptoms observed in infants who are exposed to ZIKV in the uterus, that may affect children’s overall growth, global development, and well-being over time. Due to its intense neurotropism and consequent severe brain malformations, ZIKV was responsible for the emergence of a generation of children with neurological disorders that may impose severe lifelong limitations and lifetime needs for these mchildren and their families. The association between CZS and severe forms of cerebral palsy (CP) has been already documented. According to the World Health Organization (WHO), QOL can be defined as a broad ranging concept.

Objetivo

To describe the health-related quality of life (QOL) in children with cerebral palsy (CP) associated with congenital Zika infection.

Método

Cross-sectional study of a consecutive series of children, followed in a referral multicentric rehabilitation network in Brazil. We invited the caregivers to respond to the Brazilian version of the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILDTM) questionnaire. Statistical analysis was performed with the Statistical Package for the Social Sciences (SPSS) 26.0™. We used absolute and relative frequencies for categorical variables and mean and standard deviation for continuous variables.

Resultados

The sample consisted of 193 children, at mean age of 50.3±7.6 months. We observed a predominance of children with cerebral palsy (CP) with Gross Motor Function Classification System (GMFCS) level V (93.7%). Epilepsy (88.4%) was the most common comorbidity. CPCHILDTM mean scores were activities of daily living (ADL)/personal care 43.2±12.6; positioning, transferring and mobility 33.7±16.5; comfort and emotions 84.4±15.2; communication and social interaction (CoSI) 48.2±24.3; health 70.9±17.1; and overall quality of life (OQOL) 72.1±17.1. Total score was 54.8±11.3.

Conclusão

The quality of life (QOL) scores were very similar to other populations with cerebral palsy (CP). The activities of positioning, transferring and mobility had the greatest impact on health-related quality of life (QOL). Rehabilitation strategies and public policies should prioritize aspects related to mobility for this population.

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Palavras Chave

Zika virus infection; Cerebral palsy; quality of life