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

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.

Health-related quality of life in children with cerebral palsy associated with congenital Zika infection / Qualidade de vida relacionada à saúde em crianças com paralisia cerebral associada a síndrome da Zika congênita

Abstract 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.

RESUMO 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.

Cerebral Palsy in Children With Congenital Zika Syndrome: A 2-Year Neurodevelopmental Follow-up.

OBJECTIVE: To describe the 2-year neurodevelopmental outcome in children with cerebral palsy associated with congenital Zika (CZ) and explore variables associated with a more severe presentation. METHODS: Data on 69 children with cerebral palsy associated with CZ, followed in a neurorehabilitation hospital, who consecutively attended the neurodevelopmental assessment at 2 years of age, were collected. Bayley III Scales of Infant and Toddler Development, Hammersmith Infant Neurological Examination, and Gross Motor Function Classification System were used for the outcome evaluation. Descriptive and inferential statistical analysis were performed. RESULTS: The median age at follow-up was of 24.0 (23-32) months. Only 3 (4.3%) children were not microcephalic. The majority presented with bilateral (94.2%), spastic (100.0%), Gross Motor Function Classification System grade IV or V (92.8%) cerebral palsy, epilepsy (73.1%), extremely low performances on cognitive (94.2%), language (95.7%), and motor (95.7%) Bayley-III Scales of Infant and Toddler Development Test scores. The median Hammersmith Infant Neurological Examination score was of 21.0 (range 9-75). There was a correlation between birth head circumference with the cognitive (r = 0.3, P < .01), language (r = 0.3, P < .01), and motor (r = 0.3, P < .01) Bayley-III Scales of Infant and Toddler Development Test scores, as well as with the Hammersmith Infant Neurological Examination score (r = 0.2, P < .03). An association was observed between an inferior median Hammersmith Infant Neurological Examination score with congenital microcephaly (P = .04), arthrogryposis (P = .02), and epilepsy in the first year (P < .01). CONCLUSION: Cerebral palsy related to CZ presents with a severe global impairment at a 2-year follow-up. Birth head circumference, arthrogryposis, and early epilepsy are associated with a worse outcome and may be considered as prognostic markers. These findings are important for the neurorehabilitation planning, parents' guiding, and future prognostic studies.