RESUMO
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.
Assuntos
Paralisia Cerebral , Doenças Transmissíveis , Infecção por Zika virus , Zika virus , Humanos , Criança , Pré-Escolar , Qualidade de Vida/psicologia , Infecção por Zika virus/complicações , Infecção por Zika virus/epidemiologia , Atividades Cotidianas/psicologia , Estudos Transversais , Inquéritos e Questionários , Índice de Gravidade de DoençaRESUMO
OBJECTIVE: To map available scientific evidence about the pediatric population with spina bifida submitted to transanal irrigation to manage signs and symptoms of neurogenic bowel. SOURCE OF DATA: This research was developed according to recommendations from the Joanna Briggs Institute Reviewers' Manual and the PRISMA Extension for Scoping Reviews. Searches were carried out in the databases: CINAHL, Medline/Pubmed, Scielo, Scopus, Web of Science, Embase, LILACS, Proquest, and the CAPES catalog of theses and dissertations. Quantitative and qualitative studies on the topic were included, as long as they dealt with this population. There was no predetermined time frame. SUMMARY OF THE FINDINGS: The authors found 1.020 studies, selected 130 for close reading, and included 23 in the review, all of which had been published from 1989 to 2021. The authors mapped the characteristics of the studies, including their definitions of concepts and use of scales, criteria for the indication of transanal irrigation, training to carry out the procedure, devices and solutions used, number and frequency of transanal irrigations, health care actions, time spent, associated complications, complementary exams, adherence rate, follow-up, and outcomes, focusing on the benefits for bowel management. CONCLUSIONS: Despite the variability of evaluation parameters and term definitions, evidence suggests that transanal irrigation is a safe and effective method to manage fecal incontinence. Studies in the field are likely to grow, using standardized scales and longitudinal follow-ups. The authors suggest further research on transanal irrigation in the pediatric population with spina bifida in the Latin American context.
Assuntos
Incontinência Fecal , Intestino Neurogênico , Disrafismo Espinal , Humanos , Criança , Intestino Neurogênico/terapia , Intestino Neurogênico/complicações , Constipação Intestinal/etiologia , Constipação Intestinal/terapia , Irrigação Terapêutica/efeitos adversos , Irrigação Terapêutica/métodos , Incontinência Fecal/terapia , Incontinência Fecal/complicações , Disrafismo Espinal/complicações , Disrafismo Espinal/terapiaRESUMO
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.
RESUMO
Abstract Objective To map available scientific evidence about the pediatric population with spina bifida submitted to transanal irrigation to manage signs and symptoms of neurogenic bowel. Source of data This research was developed according to recommendations from the Joanna Briggs Institute Reviewers' Manual and the PRISMA Extension for Scoping Reviews. Searches were carried out in the databases: CINAHL, Medline/Pubmed, Scielo, Scopus, Web of Science, Embase, LILACS, Proquest, and the CAPES catalog of theses and dissertations. Quantitative and qualitative studies on the topic were included, as long as they dealt with this population. There was no predetermined time frame. Summary of the findings The authors found 1.020 studies, selected 130 for close reading, and included 23 in the review, all of which had been published from 1989 to 2021. The authors mapped the characteristics of the studies, including their definitions of concepts and use of scales, criteria for the indication of transanal irrigation, training to carry out the procedure, devices and solutions used, number and frequency of transanal irrigations, health care actions, time spent, associated complications, complementary exams, adherence rate, follow-up, and outcomes, focusing on the benefits for bowel management. Conclusions Despite the variability of evaluation parameters and term definitions, evidence suggests that transanal irrigation is a safe and effective method to manage fecal incontinence. Studies in the field are likely to grow, using standardized scales and longitudinal follow-ups. The authors suggest further research on transanal irrigation in the pediatric population with spina bifida in the Latin American context.
RESUMO
STUDY DESIGN: Retrospective review of a prospective database. PURPOSE: To determine the rate of short-term surgical complications in the 3-month postoperative period in patients with myelomeningocele (MMC) who underwent surgical correction of spine deformities. METHODS: This study reviewed the medical records of MMC patients, aged ≤ 18 years, who underwent spine deformity correction between 2012 and 2018. Clinical, radiological, and surgical variables were considered. RESULTS: Forty-six patients with primary preoperative curve, pelvic obliquity, and kyphosis mean values of 84.9º, 21.5º, and 76.1º, respectively, were included. Thirty-four (74%) patients underwent scoliosis correction and 12 (26%), kyphectomy. A trend in reduction of %EBV (estimated blood volume) loss with antifibrinolytic use from 50.2 ± 32.3 to 33.8 ± 17.2% was observed (p = 0.103). Simultaneous detethering was performed in 13 (27.7%) patients and was not associated with higher short-term complication rates. There were 12 cases of short-term surgical complications (26.1%); among them, six had deep wound infection requiring surgical debridement, and one a superficial wound infection. Drainage time longer than 4 days was significantly associated with wound infection (OR = 15.8, p = 0.01). CONCLUSIONS: The surgical treatment of neuromuscular scoliosis in MMC patients is challenging because of the high comorbidity rate. Still, we found an admissible rate of short-term surgical complications with a multidisciplinary approach in a setting with extensive spine deformity surgery experience.