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. 2023 Apr 7:41:e2022016.
doi: 10.1590/1984-0462/2023/41/2022016. eCollection 2023.

Health-related quality of life in children with cerebral palsy associated with congenital Zika infection

Fernanda Jordão Pinto Marques  1 , Alessandra Lemos de Carvalho  2 , Eliana Valverde Magro Borigato  3 , Luiz Felipe Vieira de Oliveira  4 , Lenamaris Mendes Rocha Duarte  3 , Adriana Goncalves da Silva  3 , Claret Luiz Dias Amarante  1 , Laura Jácome de Melo Pereira  5 , Elise Ferreira Tavares  4 , Lilian Gleice de Sena da Costa  5 , Carolina Alves Rezende Alcântara  5 , Andrea Nakamura Salinas  5 , Fernanda de Lourdes da Cunha Pinto  6 , Gerliane Carvalho de Alcântara  6 , Fabiana Utsch  7 , Cinthia Ramos Diniz Silva  7 , Dirlene Araujo Dos Reis  8 , Wilerson Marques Bessa  8 , Rafaela Christine Dutra  8 , Paloma Ventura  2 , Tatiana Souza Oliveira  2
Affiliations

Health-related quality of life in children with cerebral palsy associated with congenital Zika infection

Fernanda Jordão Pinto Marques et al. Rev Paul Pediatr. .

Abstract
in English, Portuguese

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

Methods: 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.

Results: 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.

Conclusions: Among children with cerebral palsy (CP) related to congenital Zika syndrome, 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.

Objetivo:: Descrever a qualidade de vida relacionada à saúde em crianças com paralisia cerebral associada à infecção congênita pelo zika.

Métodos:: Estudo transversal de série consecutiva de casos de crianças acompanhadas em uma rede multicêntrica de reabilitação no Brasil. Convidamos o(s) cuidador(es) a responder à versão brasileira do Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILDTM). A análise estatística foi realizada com o pacote estatístico Statistical Package for the Social Sciences (SPSS) 26.0™. Para variáveis categóricas, foram utilizadas frequências absolutas e relativas e, para variáveis contínuas, média e desvio padrão.

Resultados:: Cento e noventa e três crianças, com idade média de 50,3±7,6 meses, foram incluídas. Observou-se predomínio de crianças com paralisia cerebral Gross Motor Function Classification System (GMFCS) nível V (93,7%). Epilepsia (88,4%) foi a comorbidade mais comum. As pontuações médias do CPCHILDTM foram: atividades de vida diária/cuidados pessoais 43,2±12,6; posicionamento, transferência e mobilidade 33,7±16,5; conforto e emoções 84,4±15,2; comunicação e interação social 48,2±24,3; saúde 70,9±17,1; e qualidade de vida geral 72,1±17,1. A pontuação total foi 54,8±11,3.

Conclusões:: Entre as crianças com paralisia cerebral relacionada à síndrome do zika congênita, as atividades de posicionamento, transferência e mobilidade tiveram maior impacto na qualidade de vida relacionada à saúde, semelhantemente a outras etiologias de paralisia cerebral. As estratégias de reabilitação e as políticas públicas devem priorizar os aspectos relacionados à mobilidade dessa população.

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Conflict of interest statement

Conflict of interests The authors declare there is no conflict of interests.

Figures

Figure 1.
Figure 1.. Criteria for participant selection.
Figure 2.
Figure 2.. SARAH network, distributed across eight cities in Brazil, with the corresponding percentage of study participation. Children with cerebral palsy associated to congenital Zika syndrome from 18 states and the Federal District were included in the study: 72 (37.3%) from the Northeast, 72 (37.3%) from the Southeast, 31 (16.0%) from Midwest, 17 (8.8%) from the North and 1 (0.6%) from the South region of Brazil.
Figure 3.
Figure 3.. Mean relevance scores for quality of life, rated by the parents, of each item of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILDTM) questionnaire, Brazil, 2020.
See this image and copyright information in PMC

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