Made available in DSpace on 2016-08-19T18:16:08Z (GMT). No. of bitstreams: 1 Rachel Vilela de Abreu Heckel.pdf: 289635 bytes, checksum: 3a1271ac479a4c44330fb0b300d6c9ac (MD5) Previous issue date: 2007-02-01 / Congenital heart disease are a group of rare defects highly associated with mortality in infancy. In the past 25 years great improvements on the care of this patients had lead us to an augmentation in the number of surgeries but still persists differences among all centers that perform surgery for congenital heart defects. The aim of this study was identify risk factors associated with poor outcomes after cardiac surgery in a population under 18 year old at the Cardiac Surgery Unit of The University Hospital of The Federal University of Maranhao. The period of the study was from June 2001 through June 2004. There were 145 patients,of which 62% were female, with median age of 5,1 years old, 56% came from the capital of the state and 11% had another associated congenital abnormality. The RACHS-1 classification(Risk adjustment for Congenital Heart Surgery) was applied to classify the adjusted risk for each surgical procedures. The risk factors identified were age, type of cardiopathy, pulmonary blood flow, cardiopulmonary bypass-time and aortic clamp time. The RACHS-1 score was applied to all 145 patients, and demonstrated increased risk of mortality for those patients in the higher score groups, although the rate found in this study was higher than that estimated by the RACHS-1 . / As cardiopatias congênitas são defeitos raros, cuja combinação é uma causa importante de óbito na infância. Os avanços ocorridos nos últimos 25 anos permitiram a ampliação do atendimento à população pediátrica portadora destes defeitos, no entanto ainda persistem diferenças entre os mais variados serviços. Com o objetivo de conhecer, descrever e avaliar a evolução pós-operatória dos pacientes pediátricos submetidos a tratamento cirúrgico realizou-se analítico, transversal, retrospectivo, no Hospital Universitário da Universidade Federal do Maranhão (HU-UFMA), no período 18 de junho de 2001 a 30 de junho de 2004. Cento e quarenta e cinco pacientes foram identificados, 62% eram do sexo feminino, 45,5% tinham entre um e cinco anos de idade à época da cirurgia (média de 5,1 anos) e 56,5% eram procedentes da capital do Estado, outras malformações associadas estiveram associadas em 11% dos pacientes, sendo a Síndrome de Down a anormalidade cromossômica mais comum. Utilizou-se o escore de risco de ajustado para cirurgia cardíaca de cardiopatias congênitas(RACHS:-1), o qual classifica os procedimentos cirúrgicos em categorias de risco de 1 a 6, e estima a mortalidade por categorias. Os fatores de risco inicialmente identificados foram a idade, o tipo de cardiopatia, o fluxo pulmonar, o tipo de cirurgia, o tempo de CEC e o tempo de anóxia. Concluiu-se que a idade entre cinco e dez anos, o hipofluxo pulmonar, o tempo de CEC acima de 65 minutos e o tempo de anóxia maior que 35,5 minutos foram fatores de risco significantes para mortalidade nesta população;a cardiopatia acianogênica mostrou significância apenas no tratamento estatístico inicial (teste do qui-quadrado), não se confirmando na análise de regressão logística; e a compatibilização as categorias de risco mais elevado e o progressivo aumento de taxa de mortalidade, porém em percentuais mais elevados para o grupo em estudo.

Heterotaxy refers to the abnormal arrangement of internal organs in relation to each other. Model organism studies have shown that functions of more than eighty genes are required for normal asymmetric left-right organ development. CRELD1 has been shown to be necessary for proper heart development and mutations in CRELD1 are known to increase risk of cardiac atrioventricular septal defects (AVSD). AVSD is the most common form of heart defect associated with heterotaxy, and we have previously shown that some individuals with heterotaxy-related AVSD have mutations in CRELD1. Therefore, we propose to examine the CRELD1 gene in a large sample of patients with heterotaxy syndrome. Our goal was to determine if mutations in CRELD1 are associated with other manifestations of heterotaxy or if they only coincide with AVSD. To achieve this aim, a sample size of 126 patients with heterotaxy collected by Dr. Belmont, Baylor college of Medicine, Texas, with approximately 66% of the heterotaxy population with different types of heart defects, were used for this study. Ten exons, promoter regions, and regulatory elements in the introns of CRELD1 gene were sequenced and analyzed. In this study three different heterozygous missense mutations in CRELD1 were identified in three unrelated individuals. These three individuals were diagnosed with different forms of heart defects in addition to AVSD. All three mutations were identified in highly conserved regions of CRELD1 possibly altering the CRELD1 properties. This demonstrates that mutations in CRELD1 may increase the susceptibility of AVSD in heterotaxy population. This information can help us to find factors effecting disease susceptibility in heterotaxy patients since the heart defects are a complex trait with incomplete penetrance.

The Fontan repair is a three-stage palliative surgical procedure for single ventricle congenital heart diseases, ultimately resulting in the right heart bypass. This is accomplished by routing the systemic venous return directly to the lungs. Although this procedure reduces the mortality rate, its long-term outcome is still considered far from optimal. Over the years several modifications have been suggested, ultimately leading to the total cavopulmonary connection (TCPC), which is the current procedure of choice. A better understanding of the hemodynamics in the TCPC is critical for further optimization of the TCPC design and surgical planning, which may lead to improved surgical outcome. Recent experimental and numerical studies have focused on characterizing the fluid dynamics of the TCPC but to date no study has attempted to relate the geometry of the TCPC anatomies with their hemodynamic parameters. The present study therefore proposes to quantify the complex geometrical characteristics of patient-specific TCPC anatomies and correlate these characteristics with their hemodynamic efficiency. A technique using skeletonization approach is thus developed to achieve this goal. The centerline approximation of the TCPC geometry is used to extract main geometric parameters such as vessel area, curvature and offset. The developed methodology is then applied to characterize the shape of various TCPC templates including extra-cardiac (EC) and intra-atrial (IA) TCPCs, TCPCs with bilateral Superior Vena Cavae and geometries before the third stage. The obtained geometric parameters are then related to the TCPC hemodynamics, particularly to the power loss.

Le brossage des dents, la mastication des aliments et toutes autres activités orales quotidiennes peuvent provoquer une bactériémie transitoire. Cette bactériémie transitoire a le potentiel de causer une endocardite infectieuse en présence de certains facteurs de risque. Les cardiopathies congénitales chez les enfants font partie de ces facteurs de risque. Le contrôle de la plaque dentaire et une bonne santé buccodentaire permettent de réduire le risque d’endocardite infectieuse. Les objectifs du présent projet de recherche visent à évaluer les connaissances des parents d’enfants atteints de cardiopathies congénitales sur l’endocardite infectieuse et son lien avec la santé buccodentaire et de connaître les habitudes d’hygiène orale personnelles et professionnelles adoptées par les enfants atteints de cardiopathies congénitales. Le projet de recherche vise également à évaluer l’efficacité de deux méthodes d’enseignement d’hygiène orale chez les enfants atteints de cardiopathies congénitales. La procédure expérimentale implique que tous les parents ou gardiens légaux d’enfants atteints de cardiopathies congénitales, âgés entre 6 et 12 ans qui visitent le service de cardiologie du CHU Sainte-Justine sont sollicités à participer au projet de recherche. Un formulaire d’information et de consentement ainsi qu’un questionnaire sont remis aux parents. Le questionnaire vise à évaluer la connaissance des parents d’enfants atteints de cardiopathies congénitales sur ce qu’est l’endocardite infectieuse et son lien avec la santé buccodentaire ainsi que de connaître les habitudes d’hygiène orale personnelles et professionnelles des enfants atteints de cardiopathies congénitales. L’examen clinique nécessaire au projet de recherche implique le prélèvement d’un indice de plaque Quigley & Hein, Turesky modifié avant et après que l’enfant participant au projet de recherche ait appliqué les instructions d’hygiène orale reçues. L’enfant est assigné à l’une des deux méthodes d’instructions d’hygiène orale avec l’aide d’une table de randomisation. La méthode d’instructions d’hygiène orale du groupe 1 correspond à des instructions transmises par le cardiologue tandis que la méthode d’instructions d’hygiène orale du groupe 2 correspond aux instructions transmises par l’intermédiaire d’un document audio visuel. Des analyses chi-carré et des tests de T pairé ainsi que des analyses de variance univariée (one-way ANOVA) et des analyses de corrélation de Pearson entre le questionnaire et les données cliniques ont été effectuées pour analyser les données recueillies. Les résultats démontrent que les parents d’enfants « à risque élevé » d’effet adverse d’une endocardite infectieuse ne connaissent pas davantage le risque d’endocardite infectieuse d’origine buccodentaire que les parents d’enfants « de moindre risque » (p=0,104). Les résultats démontrent toutefois que les parents d’enfants atteints de cardiopathies congénitales qui connaissent le risque d’endocardite infectieuse et son lien avec la santé buccodentaire adhèrent à des comportements dans le but de maintenir une bonne santé buccodentaire chez leur enfant. Les résultats qui proviennent de l’examen clinique démontrent que l’application des instructions d’hygiène orale faites par le cardiologue et par l’intermédiaire d’un document audio visuel permettent d’observer une différence statistiquement significative (p=0,000) au niveau du contrôle de la plaque dans chacun de ces groupes. Toutefois, aucune différence statistiquement significative (p=0,668) n’a pu être démontrée entre les deux méthodes d’instructions d’hygiène orale. Les parents qui connaissent le lien entre la santé buccodentaire et le risque d’endocardite infectieuse pour leur enfant atteint de cardiopathie congénitale adoptent un comportement pour optimiser la santé buccodentaire de leur enfant. Les instructions d’hygiène orale par l’intermédiaire d’un document audio visuel sont équivalentes aux instructions d’hygiène orale prodiguées par le cardiologue. / Tooth brushing and food chewing are among the oral activities that can cause transient bacteremia. A transient bacteremia can initiate infective endocarditis in patients at risk. Risk factors for infective endocarditis in children include most congenital heart diseases and it has been shown that effective plaque control and good oral hygiene can reduce the risk for infective endocarditis initiated by bacteria of oral origin. The present research objectives were drawn up to evaluate the level of knowledge of parents of children with congenital heart disease on infective endocarditis and its relation to oral health. Our other research objective was to probe the oral hygiene habits of children with congenital heart disease. The efficacy of two oral hygiene instructional methods in children with congenital heart disease was also evaluated. The experimental procedure meant the involvement of all the parents of children with congenital heart disease, between 6 and 12 years old who were visiting the department of cardiology at the CHU Sainte-Justine. They were solicited to participate in the research project and were given an information and consent form. All parents who agreed to participate were given the questionnaire that was used to evaluate the knowledge of parents of children with congenital heart disease on infective endocarditis and its association with oral health. The questionnaire also aimed to know the personal and professional oral hygiene habits of children with congenital heart disease. A clinical exam performed on each child cited the Quigley & Hein, Turesky modified plaque index before and after the utilization of the assigned oral hygiene instructions. Each child was assigned to one of the two oral hygiene instruction groups through a randomization table. The method of oral hygiene instructions of group 1 corresponded to the instructions given by the cardiologist and the method of oral hygiene instructions of group 2 corresponded the to instructions given by an audio visual presentation. Paired T-test and Chi-square analyses, as well as one-way ANOVA analysis and Pearson’s correlation analysis were produced to evaluate the data. The results demonstrated that the knowledge of the association between oral health and infective endocarditis was not superior in parents of children with higher risk of adverse effect from infective endocarditis than in parents of children with a lesser risk (p=0,104). Interestingly enough, parents of children with a congenital heart disease that are knowledgeable about the association will adopt preventive behaviors in order to promote their child’s oral heath and reduce their risk for infective endocarditis. The clinical exam also demonstrated that both oral hygiene instructions methods were effective for plaque control (p=0,000) but no significant statistical difference was found between the two methods (p=0,668). The parents of children with congenital heart disease that are aware of the association between oral health and infective endocarditis demonstrated preventive oral health behaviors to promote oral health in comparison with the parents who lacked the knowledge. The oral hygiene instructions methods given by way of the audio visual presentation was not superior to those given by the cardiologist.

Single ventricle heart defects are a rare but serious form of congenital heart disease, which affect approximately 2000 children born in the United States each year. Staged surgical palliation, culminating with the “Fontan Procedure,” is typically required to achieve adequate supply of blood to both the pulmonary and systemic circulations while avoiding chronic ventricular volume overload. This surgery reroutes the systemic veins to the pulmonary arteries, forming a total cavopulmonary connection (TCPC), to completely bypass the right side of the heart and restore a series configuration to the cardiovascular circuits. Despite improved survival through this operative course in first weeks and years of life, Fontan patients are subjected gradual attrition and decreased life expectancy through a multitude of chronic complications. It is suspected that the adverse hemodynamics of this surgically altered physiology, including those specific to the surgical TCPC, play a role in determining patient outcome. However, the small and heterogeneous patient population has hindered decisive progress and there is still not a good understanding of the optimal care strategies on a patient-by-patient basis. In recent decades, advances in medical imaging and image-based computational fluid dynamics (CFD) have redefined the realm of possibility for studying complex biomedical phenomena. Combined, these methods provide the means to create and evaluate patient-specific models of a wide range of cardiovascular structures, including the TCPC, with high fidelity. Results from these models can then be used for a wide array of different analyses, such as identifying regions of flow separation or stagnation, calculating hemodynamic power loss, or quantifying local flow distribution patterns. Through significant effort from numerous past investigators, a robust set of validated computational and image processing tools has been assembled, along with the largest library of cardiac magnetic resonance (CMR) data of TCPC anatomy and flow. These tools are leveraged in this thesis to characterize the functional implications of TCPC power loss at an unprecedented scale: we report the largest CFD analysis of patient-specific TCPC hemodynamics to date with particular focus on identifying functional correlates. Combining these data with imaging-based analysis of ventricle function, we directly compare the CFD-derived hemodynamics to the performance of the single ventricle for the first time. Motivated by the physiologic significance of these findings, the same patient-specific CFD framework is used for the translational application of prospective surgery planning for hemodynamic optimization, including the first implementation of a novel TCPC connection design hypothesized to uniquely streamline the energetic performance. We conclude with a first look at the longitudinal evolution of patient functional status to begin understanding how factors such as TCPC hemodynamics contribute to poor long-term performance in these patients.

[pt] O presente estudo tem por objetivo a compreensão do papel da mãe na relação com o bebê cardiopata. Baseado na teoria winnicottiana, mostra ser o meio-ambiente facilitador elemento fundamental para uma relação boa o bastante ou deficitária. Para a realização da pesquisa, utilizou-se entrevistas semi-estruturadas e aplicação de desenho sobre a relação mãe-bebê. Entrevistou-se 4 mães de bebês cardiopatas, com idades de 0 a 12 meses. Os resultados revelaram temas relacionados à forma como as mães se adaptam à situação de ter um filho com uma cardiopatia congênita, ao impacto causado na família, aos sentimentos e atitudes maternos e ao medo de perder o bebê. A partir disto, este estudo propõe que, tal como o bebê, a mãe precisa ser cuidada e apoiada. Para tal, é essencial cuidar também de seu meio-ambiente, representado pelo marido, pelos filhos, pela família e pelos amigos. O tipo de relação estabelecida entre a mãe e o bebê dependerá dos cuidados recebidos desse meioambiente. / [en] The objective of the present work is to understand the mother s role in its relation with the baby with congenital heart disease. Based on Winnicott s theory, it shows that the facilitating environment is the fundamental element for a good enough relationship or a not good enough one. An interview guide was used to collect the data, which has a semi-structured conversational format; mother-baby relationship s drawing were used too. Four mothers of babies (from 1 to twelve months old) with congenital heart disease had been interviewed. The results revealed themes related to the way these mothers get used to the situation of having a baby with congenital heart disease; to the impact caused in the family; to the maternal feelings and attitudes and to the fear of the baby s death. From these results, this study proposes that, just like the baby, the mother needs to be cared and supported. For this, it is essential to take care of the mother s environment too, represented by her husband, by her children, by her family and by her friends. The type of the relationship established between the mother and the baby will depend on the care taken by this environment.

Submitted by Viviane Lima da Cunha (viviane@biblioteca.ufpb.br) on 2017-07-06T13:03:15Z No. of bitstreams: 1 arquivototal.pdf: 2397887 bytes, checksum: 02b09da7c8ccdfb1dbbf31dd43c59ee8 (MD5) / Made available in DSpace on 2017-07-06T13:03:15Z (GMT). No. of bitstreams: 1 arquivototal.pdf: 2397887 bytes, checksum: 02b09da7c8ccdfb1dbbf31dd43c59ee8 (MD5) Previous issue date: 2017-02-23 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - CAPES / Heart diseases are responsible for more deaths in the first year of life than any other congenital problem in Brazil, affecting 8 to 10 children per 1000 live births. There are several types of heart diseases, some heal with time others require surgery. Evaluating the characteristics of the surgeries, it is possible to obtain the probability of the occurrence of postoperative complications and the estimation of the length of stay in the ICU (Intensive Care Unit) that varies according to the typology of this occurrence and the patient health condition. In this sense, the use of statistical models can help to optimize the care of patients in unfavorable clinical conditions. The aim of this study is to develop a tool based on statistical models to assist decision making about the chronological order of the surgeries to be performed. The data from this study came from the charts of the children destined to the execution of the surgery of congenital heart disease in the reference center that composes the Pediatric Cardiology Network PE-PB in the State of Paraíba. A logistic regression model was used to estimate the probability of occurrence of postoperative complications and survival analysis techniques to detect differences between the influence of determining factors on the length of ICU stay after the surgery. All data were analyzed in statistical software R, version 3.2.0. A total of 130 children were included, which 86.15% being below 10 years of age and weighing between 5 and 25 kg. Of the 72 children who presented post-surgical complications, 22.3% presented shunt-type cardiopathy, and 10% had Patent Ductus Arteriosus, followed by 9.2% with Tetralogy of Fallot. The risk factors identified by logistic regression as more associated with the outcome "developing post-surgical complications" were: high risk score (OR = 12.9; p-value = 0.02), presence of acyanotic obstructive heart disease (OR = 12.5, p-value = 0.006), the aortic clamping time during surgery greater than 20 minutes (OR = 3.3; p-value = 0.01), the time of extubation during the surgery (OR = 1.1, p-value = 0.07), presence of pulmonary arterial hypertension (OR = 6.7, p-value = 0.09) and age less than 6 months (OR = 3, 6; p-value = 0.05). In the survival analysis, it was possible to verify that there are statistically significant differences in length of ICU stay between children less than 6 months and older children; Also among children who presented high surgical risk and those who did not present; And among children where there is presence or absence of pulmonary arterial hypertension, in which the presence of some of these characteristics implies a greater probability of permanence for a certain time in the ICU. Also through the survival analysis, it was possible to observe that besides the factors identified through the logistic regression, the occurrence of postoperative infection in children also entails a longer hospitalization time after the surgery. Both techniques analyzed together, were able to build estimates for a certain hospital stay in cases of occurrence or not of postoperative complications, bringing support to hospital planning decisions, resulting in the optimization of the rotation of the available beds, in addition to the suggestion of chronological order of the queue of the next surgeries of congenital cardiopathy to be performed. / As cardiopatias são responsáveis por mais mortes no primeiro ano de vida do que qualquer outro problema congênito no Brasil, acometendo de 8 a 10 crianças a cada 1000 nascidos vivos. Existem diversos tipos de cardiopatia, algumas curam com o tempo, outras requerem intervenções cirúrgicas. Avaliando as características das cirurgias, é possível obter a probabilidade da ocorrência de complicações pós-cirúrgicas, e a estimativa do tempo de internamento em UTI que varia de acordo com a tipologia dessa ocorrência e com o perfil clínico do paciente. Neste sentido, a utilização de modelos estatísticos, pode auxiliar a otimização do cuidado a pacientes em condições clínicas desfavoráveis, sendo a proposta deste estudo, desenvolver uma ferramenta baseada em modelos estatísticos para auxiliar à tomada de decisões acerca da ordem cronológica das cirurgias a serem executadas. Os dados desse estudo provieram dos prontuários das crianças destinadas à execução da cirurgia de cardiopatia congênita no centro de referência que compõe a Rede de Cardiologia Pediátrica PE-PB no Estado da Paraíba. O modelo de regressão logística foi utilizado para estimar a probabilidade de ocorrência de complicações pós-cirúrgicas e as técnicas de análise de sobrevivência, para detectar diferenças entre a influência de fatores determinantes sobre os tempos de internamento em Unidades de Terapia Intensiva após a realização das cirurgias. Todos os dados foram analisados no software estatístico R, versão 3.2.0. Foram incluídas 130 crianças, sendo 86,15% com idade inferior a 10 anos de idade e peso se concentrando entre 5 e 25 quilos. Das 72 crianças que apresentaram complicações pós-cirúrgicas, 22,3% apresentaram a cardiopatia do tipo shunt, e no tocante ao diagnóstico, observou-se que 10% eram portadores de Persistência do Canal Arterial, seguido de 9,2% portadores de Tetralogia de Fallot. Os fatores de risco identificados pela regressão logística como mais associados com o desfecho “desenvolver complicações pós-cirúrgicas” foram: apresentar escore de risco alto (OR=12,9; p-valor=0,02), a presença de cardiopatia acianótica obstrutiva (OR=12,5; p-valor=0,006), o tempo de clampeamento aórtico durante a cirurgia ser superior a 20 minutos (OR=3,3; p-valor=0,01), o tempo de extubação durante a realização da cirurgia (OR=1,1; p-valor=0,07), a presença de hipertensão arterial pulmonar (OR=6,7; p-valor=0,09) e idade inferior a 6 meses (OR=3,6; p-valor=0,05). Na análise de sobrevivência, foi possível constatar que existem diferenças estatisticamente significativas sobre o tempo de internamento em UTI entre as crianças com menos de 6 meses de idade e as crianças com idade superior; também entre as crianças que apresentaram alto risco cirúrgico e as que não apresentaram; e entre as crianças onde há presença ou ausência de hipertensão arterial pulmonar, em que a presença de alguma(s) dessas características implica em maiores probabilidades de permanência por um determinado tempo em UTI. Ainda através da análise de sobrevivência, foi possível observar que além dos fatores identificados através da regressão logística, a ocorrência de infecção pós-operatória nas crianças também acarreta maior tempo de internamento após a cirurgia. Ambas as técnicas analisadas conjuntamente, foram capazes de construir estimativas para um determinado tempo de internamento hospitalar em casos de ocorrência ou não de complicações pós-cirúrgicas, trazendo apoio às decisões do planejamento hospitalar, resultando na otimização da rotatividade dos leitos disponíveis, além da sugestão de ordenação cronológica da fila de espera das próximas cirurgias de cardiopatia congênita a serem executadas.

Trata-se de pesquisa metodológica, tipo validação, que realizou a tradução da cartilha \"A volta para casa depois da cirurgia cardíaca infantil\" para o português (versão Brasil). O processo de validação da cartilha abrangeu três etapas: 1) Tradução da cartilha do idioma espanhol para o português (Brasil); 2) Comitê de Especialistas; 3) Retrotradução. O projeto de pesquisa foi aprovado pelo Comitê de Ética em Pesquisa da Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo. Ressalta-se que todos os princípios éticos relacionados a pesquisas envolvendo seres humanos foram respeitados. Após tradução da cartilha para o português (versão Brasil), o material foi avaliado por um comitê de especialistas, composto em sua maioria por enfermeiros, com idade entre 30 a 39 anos e tempo de formação de cinco a nove anos. As sugestões deste grupo de profissionais, que objetivaram a melhor compreensão dos leitores e a clareza das informações, foram incorporadas à tradução mediante a obtenção de aceitação de 80% dos avaliadores do item contendo a modificação realizada. Após duas rodadas, atingida essa porcentagem, realizou-se a retrotradução e foram enviadas a versão final em português e a versão retrotraduzida à Organização que desenvolveu a cartilha na Espanha, para fins de aprovação. A maioria dos temas abordados pela cartilha encontra-se relatada na literatura como aspectos essenciais no processo de alta hospitalar da criança, o que demonstra o grande potencial deste material para auxiliar os pais e até mesmo as próprias crianças. Como contribuição para a enfermagem, tem-se que a distribuição da cartilha \"A volta a casa após a cirurgia cardíaca da criança\" pode tornar esse momento mais fácil e menos sofrido para as famílias, sobretudo ao cuidador. Uma vez que a educação de pacientes e familiares é um dos papeis do enfermeiro, que deve empoderá-los para um cuidado mais qualificado, a cartilha se fará uma aliada para esse recomeço, após a alta hospitalar / This is a methodological research, characterized as validation, which held a handbook translation from Spanish to Portuguese - The return to home after the child\'s heart surgery (Brazilian version). The validation process was based on three stages: 1) Translation of the handbook from Spanish to Portuguese (Brazil); 2) Expert Committee; 3) Back-translation. The Ethics Research Committee of Ribeirão Preto School of Nursing, University of São Paulo, approved the research. All ethical principles related to research involving human beings were respected. Translation was performed to Portuguese (Brazilian version), and it was evaluated by an expert committee composed mostly of nurses, aged 30 to 39 years and with work experience of five to nine years. Their suggestions were related to a better understanding of readers and the clarity of the information. These suggestions were added into the translation handbook when they achieved 80% of the experts evaluation acceptance for the item in which the change was made. After two rounds of the expert committee evaluation and reached that percentage of acceptance, a back-translation was performed and sent to the Organization who developed the original handbook in Spain as well as a Portuguese final version. The back translation was approved by the Organization in Spain. Most of the issues addressed by the handbook are highlighted in the literature as essential in the hospital child discharge process. The fact of addressing issues so important, shows how the handbook has the potential to assist parents and even children. As a contribution to nursing field, the handbook \"The return home after the child\'s heart surgery\" can make this time easier, less tortuous and lighter for the families, especially for the caregiver. Considering that, one of the nurses\' roles, is the education of patients and their families in order to empower them for a more skilled care, the handbook will be an important source of information for the child and the family in return home

Este estudo teve como objetivo realizar a validação clínica do diagnóstico de enfermagem da North American Nursing Diagnoses Association (NANDA, 2006) Desobstrução ineficaz de vias aéreas de crianças e adolescentes submetidos à correção cirúrgica de cardiopatia congênita, em um hospital de ensino público de nível terciário da cidade de Ribeirão Preto-SP. O projeto teve aprovação do Comitê de Ética e Pesquisa da referida instituição, foram incluídos os profissionais que aquiesceram em participar do estudo e os sujeitos cujos responsáveis autorizaram. Adotou-se o modelo de validação clínica proposto por Hoskins (1989) que inclui as seguintes etapas: análise de conceito, validação por especialistas e validação clínica. Após ampla revisão da literatura foram descritos os conceitos relacionados a cada uma das características definidoras, em seguida o diagnóstico foi analisado por 40 enfermeiros considerados peritos, segundo a pontuação de Fehring (1994). A adequação do título e da definição do diagnóstico em estudo foi considerada adequada por 70% dos peritos. Em relação às 13 características definidoras propostas pela NANDA (2006), 04 receberam, dos peritos, escores considerados maiores, 07 menores e 02 obtiveram escores abaixo de 0,50, ou seja, avaliadas como não indicativas para o diagnóstico desobstrução ineficaz das vias aéreas. Procedeu-se a validação clínica por duas enfermeiras peritas, que analisaram a presença do diagnóstico e as respectivas características definidoras em 50 crianças e adolescentes. Em relação a presença do diagnóstico na clientela estudada houve a concordância de 97,7% dos enfermeiros peritos. A única característica definidora que obteve o coeficiente de confiabilidade segundo os critérios de Fehring foi tosse ausente; pesar de apenas esta característica definidora estar presente, foi suficiente para confirmar a presença deste diagnóstico na população estudada. Por se tratar de uma população específica e em condições de pós-operatório imediato, ou seja, 60% dos sujeitos estavam sob efeitos de anestésicos no momento da validação clínica, torna-se necessário o desenvolvimento de estudos futuros que possam validar o diagnóstico Desobstrução ineficaz de vias aéreas em crianças e adolescentes em outras situações clínicas. Porém, a identificação deste diagnóstico em crianças e adolescentes submetidos à correção cirúrgica de cardiopatia congênita poderá contribuir para a elaboração de um plano de assistência de enfermagem de qualidade, uma vez que se não atendido prontamente pode levar os indivíduos a sérias complicações. / This study aimed to accomplish the clinical validation of the nursing diagnoses of the North American Nursing Diagnoses Association (NANDA, 2006) Ineffective airway clearance of children and teenagers who underwent surgical correction of congenital heart diseases at a public teaching hospital, working with complex diagnosis and treatments, in the city of Ribeirão Preto. The project has been approved by the Ethics and Research Committee of the referred institution. It has been included the professionals that wanted to participate in the study and subjects whose responsible have authorized. It has been adopted the clinical validation model proposed by Hoskins (1989) which includes the following stages: concept analysis, validation by specialist and clinical validation. After an ample literature review it has been described the concepts related to each one of the defining characteristics, afterwards the diagnoses was analyzed by 40 nurses who are considered to be experts, according to the Fehring scoring (1994). The adaptation of the title and the definition of the diagnoses under study were considered adequate by 70% of the experts. In relation to the 13 defining characteristics proposed by NANDA (2006), four received scores that were considered higher by experts, seven were considered lower and two scores were below 0,50 that is, they were assessed as not indicative for diagnosis of ineffective airway clearance. The clinical validation was carried out by two expert nurses, who analyzed the presence of the diagnoses and the respective defining characteristics in 50 children and teenagers. In relation to the presence of the diagnosis on the studied patients, there was the agreement of 97,7% of the expert nurses. The only defining characteristic which achieved the coefficient of reliability according to the Fehring criteria was absence of cough. Although it was the only defining characteristic present, it was sufficient to confirm the presence of this diagnosis on the studied population. Because of the characteristics of being a specific population, under condition of immediate post operative, that is 60% of the subjects were under anesthetic effect at the moment of clinical validation, it is necessary the development of future studies that can validate the diagnosis Ineffective airway clearance in children and teenagers in other clinical situations. However the identification of this diagnosis in children and teenagers who underwent surgical correction for congenital heart disease will be able to contribute to the elaboration of a quality assistance program in nursing, once that if the individual is not promptly assisted there can be serious complications to the patients.

Submitted by Nadir Basilio (nadirsb@uninove.br) on 2018-07-20T20:26:04Z No. of bitstreams: 1 Marcia Helena Machado Nascimento.pdf: 4734214 bytes, checksum: d3e07e20873861d014bba8270609ff30 (MD5) / Made available in DSpace on 2018-07-20T20:26:04Z (GMT). No. of bitstreams: 1 Marcia Helena Machado Nascimento.pdf: 4734214 bytes, checksum: d3e07e20873861d014bba8270609ff30 (MD5) Previous issue date: 2018-03-05 / Introduction: The Modified Shuttle Test (MST) is useful to assess the functional capacity of children with Congenital Heart Disease (CHD) due to its incremental characteristic and for being externally cadenced. Objective: To assess functional capacity and quality of life in children with CHD pre and post surgery. Methods: A transversal (Study I) and longitudinal study (Study II), that took place in a public hospital (heart disease group – GCard) and in a high school (control group – GC). In Study I the participants were children with CHD (n=32, 6-12 years old) vs control group (healthy children, n=32). In Study II, children with acyanotic congenital heart, age 6-12 years old, were assessed before hemodynamic or surgery procedures (pre-procedure, n=32), up to 15 days after hospital discharge (post-procedure 15, n=21), and up to 30 days after hospital discharge (post-procedure 30, n=27). Both studies assessed lung function, used the pediatric quality of life inventory (PedsQL4.0) and the Modified Shuttle Test (MST). Heart rate (HR), blood pressure (BP) and oxygen saturation were assessed during rest, during the test, at peak exercise, and in the recovering time. We considered HR x BPsystolic as the Double Product. Results: In Study I, the distance achieved was higher in the GC group when compared to the GCard group (644,6 ± 160,7m, p <0,001). At peak exercise we observed statically significant differences in the variables heart rate (bpm and %prev), SpO2, desaturation at peak exercise, and distance achieved, where these variables were lower in the heart disease group in comparison to the control group, p<0,05. PedsQL4.0 was worse in the GCard, and there was significant correlation between distance achieved and the dominance over the physical activity (r = 0,95,p <0,001). Study II showed that functional capacity was reduced in the pre-procedure (69,1 ± 17,5%prev), with significant worsening in the post-procedure 15 (55,7 ± 18,0%prev), and recovery in the post-procedure 30 (78,9 ± 12,8), p<0,05. The double product was not statistically different during the assessed periods of time, although, when correcting this variable with the distance achieved, we found that the children in the post-procedure 15 (23 – 39, median=31) had significant higher values when compared to the post-procedure (19 – 29, median=25), p<0,05. There was significant correlation between distance achieved and the psychosocial domain of the children age 8 to 12 years old (PedsQL 8-12) in the post-procedure 15 (r=0,70, p=0,002). The distance achieved was correlated to the item physical activity (5 -7 years old) in the post-procedure 15 (r=0,90, p=0,03). Conclusion: Children with congenital heart disease has reduced functional capacity and quality of life. Additionally, the surgery to correct the disease increses the functional capacity and quality of life after 30 days of the procedure. / Introdução: O shuttle teste modificado (STM) é útil para avaliar a capacidade funcional de crianças com cardiopatia congênita (CC) por ter característica incremental e ser cadenciado externamente. Objetivo: Avaliar a capacidade funcional e a qualidade de vida de crianças com CC no pré-operatório e após procedimento cirúrgico. Método: estudo transversal (Estudo I) e longitudinal (Estudo II), realizado no hospital público (grupo cardiopatia -GCard) e na escola de ensino médio (grupo controle- GC). Participaram do Estudo I crianças CC (n = 32, 6-12 anos) vs grupo controle (crianças saudáveis, n = 32). Estudo II, crianças com doença cardíaca congênita acianótica de 6 a 12 anos no pré-procedimento hemodinâmico ou cirúrgico (pré, n=32), até 15 dias de alta hospitalar (pós 15, n=21), e 30 dias de alta hospitalar (pós 30, n=27). Em ambos estudos foram avaliadas a função pulmonar, qualidade de vida (PedsQL4.0) e shuttle teste modificado. A frequência cardíaca (FC), a pressão arterial (PA) e a saturação de oxigênio foram avaliadas em repouso, no decorrer do teste, no pico do exercício e na recuperação do teste. Resultados: No estudo I, a distância percorrida foi maior no GC (829,6 ± 129,0 m) comparado ao GCard (644,6 ± 160,7m), p <0,001. No pico do exercício no STM foram observadas diferenças estatisticamente significativas nas variáveis frequência cardíaca, SpO2, dessaturação no pico, distância percorrida, sendo essas menores no grupo cardiopata em relação ao controle, p<0,05. O PedsQL 4.0 foi pior no GCard, e houve correlação significante entre a distância percorrida e o domínio da atividade física (r = 0,95, p<0,001). No estudo II, a capacidade funcional estava reduzida (69,1± 17,5%prev) no pré; com piora significante no pós 15 (55,7 ± 18,0%prev) e melhora da após 30 dias de alta (78,9 ± 12,8), p<0,05. O duplo produto (PAS x FC) não foi estatisticamente diferente no pré, pós 15 e pós 30, entretanto, ao corrigir essa variável pela distância percorrida, notam-se que os pacientes no pós 15 tiveram valores 31 (23 – 39mmHg/bpm) significantemente maiores comparado ao pré-operatório 25 (19 – 29mmHg/bpm), p<0,05. Correlação significante entre a distância percorrida e o domínio psicossopcial das crianças entre 8-12 anos (PedsQL 8-12) na fase pós 15 (r=0,70, p=0,002). A distância percorrida correlacionou-se com o domínio atividade criança (5 -7 anos) na fase pós 15 (r=0,90, p=0,03). Conclusão: Crianças com cardiopatia congênita apresentam redução na capacidade funcional e da qualidade de vida. A correção do defeito anatômico no coração resulta em melhora da capacidade funcional e na qualidade de vida desses pacientes após 30 dias de cirurgia.