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.

Neurodevelopmental outcomes in a cohort of children with congenital Zika syndrome at 12 and 24 months of age.

BACKGROUND: Early child development is a critical stage of life that influences social, educational and health outcomes worldwide. A few years after Zika epidemic, families of children born with congenital Zika syndrome (CZS) continue to face uncertainties when it comes to the development of their children. The present study sought to analyse the developmental trajectories of a subset of children born with CZS in the first 24 months of life. METHODS: Thirty-five children with CZS were assessed with the Bayley-III Scales at 12 and 24 months of age from November 2016 to December 2018 in a rehabilitation centre in Brazil. Inclusion criteria included children with established diagnosis of CZS. Exclusion criteria included the presence of arthrogryposis, prematurity, irregular follow-up, clinical complications or other causes of microcephaly. Children born with CZS who evolved with cerebral palsy (CP) were classified according to the Gross Motor Function Classification System (GMFCS) at 2 years of age. RESULTS: At 12 months of age mean composite scores on the Bayley cognitive, communication and motor scores were 57.71 (SD 7.11), 57.94 (SD 14.34) and 49.26 (7.20), respectively. At 24 months of age, composite scores were 57.43 (SD 7.11), 53.60 (SD 12.29) and 48.83 (7.76). In addition, 31 (88.57%) out of 34 children diagnosed with CP were classified as GMFCS levels IV and V. CONCLUSION: Zika virus congenital infection is a risk factor for functional impairments across all developmental domains having a direct and substantial negative impact in early child development.

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.

Treinamento de habilidades sociais educativas para pais de crianças com problemas de comportamento / Training parent social skills for families of children with behavior problems

Este artigo descreve um programa de Treinamento de Habilidades Sociais para pais de crianças com problemas de comportamento. O programa, com duração de 11 semanas, apresentou, por meio de passos semanais seqüenciados, princípios da análise do comportamento para a prática disciplinar não-coerciva e modelos de habilidades sociais educativas para pais, com tarefas semanais de observar o comportamento do filho, estabelecer condições de aprendizagem e desempenho de comportamentos desejáveis (empatia, seguimento de instruções, independência etc.), expressão afetiva entre outros. Participaram do programa 32 mães e dois pais, com avaliações pré e pós-intervenção por meio de questionários de auto-relato e entrevistas. Os resultados mostraram redução significativa na freqüência e severidade de comportamentos importunos e/ou indisciplinados, conforme avaliação dos pais. Concluiu-se que o enfoque de habilidades sociais educativas para pais pode contribuir positivamente para o desenvolvimento de práticas disciplinares não-coercivas junto a essa clientela.

This paper describes a Parental Social Skills Program aimed to reduce children behavior problems. The program, lasting 11 weeks, was implemented by means of weekly sequential steps starting with behavior analysis principles for parents to practice a non-coercitive discipline and to learn, models of parental social skills. Parents received weekly home assignments to observe the children's behavior, to establish favorable learning conditions for children to behave in desirable ways (empathy, compliance, independence etc.) and to adequately express emotions. Thirty-two mothers and two fathers participated in the program. Self-report questionnaires and open interviews in the pre-and post-intervention phases were used to assess the program's efficacy. Results showed significant reduction in the frequency and severity of disruptive and/or noncompliant behavior, as assessed by the parents. In conclusion, the approach of educational social abilities for parents may contribute positively to the development of non-coercitive disciplinary practices.

Treinamento de habilidades sociais educativas para pais de crianças com problemas de comportamento / Training parent social skills for families of children with behavior problems

Este artigo descreve um programa de Treinamento de Habilidades Sociais para pais de crianças com problemas de comportamento. O programa, com duração de 11 semanas, apresentou, por meio de passos semanais seqüenciados, princípios da análise do comportamento para a prática disciplinar não-coerciva e modelos de habilidades sociais educativas para pais, com tarefas semanais de observar o comportamento do filho, estabelecer condições de aprendizagem e desempenho de comportamentos desejáveis (empatia, seguimento de instruções, independência etc.), expressão afetiva entre outros. Participaram do programa 32 mães e dois pais, com avaliações pré e pós-intervenção por meio de questionários de auto-relato e entrevistas. Os resultados mostraram redução significativa na freqüência e severidade de comportamentos importunos e/ou indisciplinados, conforme avaliação dos pais. Concluiu-se que o enfoque de habilidades sociais educativas para pais pode contribuir positivamente para o desenvolvimento de práticas disciplinares não-coercivas junto a essa clientela.(AU)

This paper describes a Parental Social Skills Program aimed to reduce children behavior problems. The program, lasting 11 weeks, was implemented by means of weekly sequential steps starting with behavior analysis principles for parents to practice a non-coercitive discipline and to learn, models of parental social skills. Parents received weekly home assignments to observe the children's behavior, to establish favorable learning conditions for children to behave in desirable ways (empathy, compliance, independence etc.) and to adequately express emotions. Thirty-two mothers and two fathers participated in the program. Self-report questionnaires and open interviews in the pre-and post-intervention phases were used to assess the program's efficacy. Results showed significant reduction in the frequency and severity of disruptive and/or noncompliant behavior, as assessed by the parents. In conclusion, the approach of educational social abilities for parents may contribute positively to the development of non-coercitive disciplinary practices.(AU)