Validation and reliability of the Japanese version of the Food Allergy Quality of Life Questionnaire - Parent Form

Background: Food allergy (FA) is a heavy burden for patients and their families and can significantly reduce the quality of life (QoL) of both. To provide adequate support, qualitative and quantitative evaluation of the parents' QoL may be helpful. The objective of this study is to develop and validate a Japanese version of the Food Allergy QoL QuestionnaireeParent Form (FAQLQ-PF-J), an internationally validated disease-specific QoL measurement of the parental burden of having a child with FA. Methods: The FAQLQ-PF and the Food Allergy Independent Measure (FAIM), an instrument to test the construct validity of the FAQLQ-PF-J, were translated into Japanese. After language validation, the questionnaires were administered to parents of FA children aged 0e12 years and those of age-matched healthy (without FA) children. Internal consistency (by Cronbach's a) and test-retest reliability were evaluated. Construct validity and discriminant validity were also examined. Results: One hundred twenty-seven parents of children with FA and 48 parents of healthy children filled out the questionnaire. The FAQLQ-PF-J showed excellent internal consistency (Cronbach's a > 0.77) and test-retest reliability. Good construct validity was demonstrated by significant correlations between the FAQLQ-PF-J and FAIM-J scores. It discriminated parents of children with FA from those without. The scores were significantly higher (lower QoL) for parents of FA children with a history of anaphylaxis than those without, for those with >6 FA-related symptoms experienced than those with less FA-related symptoms. Conclusions: The FAQLQ-PF-J is a reliable and valid measure of the parental burden of FA in children.

Avaliação da eficácia de remoção do biofilme oral após a instrução da escovagem dentária em pacientes com necessidades educativas especiais

No âmbito da Medicina Dentária define como Paciente com Necessidades Especiais (PNE) todos o indivíduo que apresenta determinados desvios dos padrões de normalidade, identificáveis ou não e que por isso necessitam de atenção e abordagens especiais por um período da sua vida ou indefinidamente. De acordo com a Organização Mundial de Saúde (OMS), cerca de 10% da população mundial é constituída por pacientes especiais, sendo 50% portadores de deficiência mental, 20% de deficiência física, 15% de deficiência auditiva, 5% de deficiência visual e, 10% de alterações múltiplas. Indivíduos com necessidades especiais têm um risco elevado de ter doenças orais. Se, por um lado, um dos grandes objetivos deste trabalho é realçar a importância da higiene oral, não será menos importante, por outro lado, refletir sobre a eficácia da remoção do biofilme dentário através da técnica mais adequada para pacientes com necessidades educativas especiais. Assim, os principais objetivos deste estudo são: i. Perceber previamente ao estudo, quais as noções de higiene oral dos encarregados de educação dos alunos com necessidades educativas especiais e os hábitos de saúde oral que lhes estão associados; ii. Promover e melhorar a saúde oral desta população através de técnicas de motivação como jogos, apresentações de slides através do programa Microsoft powerpoint, filmes; iii. Levar os alunos com NEE a aprender a técnica mais adaptada às suas necessidades através do treino em macromodelos; iv. Comparar os valores do índice de placa no início e no final do estudo para perceber se houve ou não melhoria. Foi utilizada a base de dados do Pubmed, tendo sido pesquisados artigos com as palavras-chave “dental care in special children”, “especial needs”, “oral hygiene”, “oral health”; “deaf children and oral health”, “dental plaque” e “mechanic plaque control”. Foram incluídos os artigos escritos em Português e Inglês, aos quais houvesse acesso integral do artigo, dos últimos 10 anos. Foi realizada também uma consulta de livros relacionados com o tema. A população alvo foram os utentes da instituição CERCIPENICHE, portadores de dificuldade intelectual e desenvolvimental (DID) que compreendiam idades entre os 20 e os 57 anos. A amostra é constituída por 53 indivíduos. O estudo inclui todos aqueles alunos da instituição que conseguiam realizar a escovagem dentária sozinhos, sem qualquer ajuda. A investigação dividiu-se em 3 fases: na primeira fase foi avaliada a eficácia da escovagem dentária dos utentes sem qualquer instrução por parte do investigador, recorrendo a um revelador de placa bacteriana sem qualquer contraindicação para a saúde do indivíduo; numa segunda etapa foram dadas instruções de técnicas de escovagem com base nos resultados da fase anterior, auxiliando com atividades de motivação para a higiene da cavidade oral; por fim foi realizada uma nova avaliação do índice de placa bacteriana para verificar se houve ou não eficácia na remoção do biofilme dentário. Apesar das limitações físicas e mentais destes pacientes atuarem como um travão para uma boa higiene oral, os resultados são positivos, indicam que se verificou a existência de melhorias significativas no IHO-s após a intervenção. Do primeiro para o segundo momento houve uma diminuição dos valores médios deste índice, ou seja, houve uma melhoria na higiene oral desta população, após a instrução. Conclui-se que é importante para estes pacientes reforçar-se continuamente os hábitos de higiene oral, uma vez que reforça a interiorização do conhecimento, havendo não só melhorias na saúde oral destes indivíduos como melhoria na sua qualidade de vida e na saúde em geral.

O efeito da hidroterapia na dor, qualidade de vida e funcionalidade em pacientes com fibromialgia

Projeto de Graduação apresentado à Universidade Fernando Pessoa como parte dos requisitos para obtenção do grau de Licenciado em Fisioterapia

What Are Effective Program Characteristics of Self-Management Interventions in Patients With Heart Failure? : An Individual Patient Data Meta-analysis

Background To identify those characteristics of self-management interventions in patients with heart failure (HF) that are effective in influencing health-related quality of life, mortality, and hospitalizations. Methods and Results Randomized trials on self-management interventions conducted between January 1985 and June 2013 were identified and individual patient data were requested for meta-analysis. Generalized mixed effects models and Cox proportional hazard models including frailty terms were used to assess the relation between characteristics of interventions and health-related outcomes. Twenty randomized trials (5624 patients) were included. Longer intervention duration reduced mortality risk (hazard ratio 0.99, 95% confidence interval [CI] 0.97–0.999 per month increase in duration), risk of HF-related hospitalization (hazard ratio 0.98, 95% CI 0.96–0.99), and HF-related hospitalization at 6 months (risk ratio 0.96, 95% CI 0.92–0.995). Although results were not consistent across outcomes, interventions comprising standardized training of interventionists, peer contact, log keeping, or goal-setting skills appeared less effective than interventions without these characteristics. Conclusion No specific program characteristics were consistently associated with better effects of self-management interventions, but longer duration seemed to improve the effect of self-management interventions on several outcomes. Future research using factorial trial designs and process evaluations is needed to understand the working mechanism of specific program characteristics of self-management interventions in HF patients.

Comparing children's self-report instruments for health-related quality of life using the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY)

Children with chronic conditions often experience a long treatment which can be complex and negatively impacts the child's well-being. In planning treatment and interventions for children with chronic conditions, it is important to measure health-related quality of life (HrQoL). HrQoL instruments are considered to be a patient-reported outcome measure (PROM) and should be used in routine practice. Purpose: The aim of this study was to compare the content dimensions of HrQoL instruments for children's self-reports using the framework of ICF-CY. Method: The sample consist of six instruments for health-related quality of life for children 5 to 18 years of age, which was used in the Swedish national quality registries for children and adolescents with chronic conditions. The following instruments were included: CHQ-CF, DCGM-37, EQ-5D-Y, KIDSCREEN-52, Kid-KINDL and PedsQL 4.0. The framework of the ICF-CY was used as the basis for the comparison. Results: There were 290 meaningful concepts identified and linked to 88 categories in the classification ICF-CY with 29 categories of the component body functions, 48 categories of the component activities and participation and 11 categories of the component environmental factors. No concept were linked to the component body structures. The comparison revealed that the items in the HrQoL instruments corresponded primarily with the domains of activities and less with environmental factors. Conclusions: In conclusion, the results confirm that ICF-CY provide a good framework for content comparisons that evaluate similarities and differences to ICF-CY categories. The results of this study revealed the need for greater consensus of content across different HrQoL instruments. To obtain a detailed description of children's HrQoL, DCGM-37 and KIDSCREEN-52 may be appropriate instruments to use that can increase the understanding of young patients' needs.

The influence of HIV, HCV and inhibitors on the quality of life and behavior of the disease in patients with haemophilia: An observational study

Inhibitors are the main complication in the treatment of haemophilia. A high percentage of adult patients were infected in past decades by HIV and HCV through factor concentrates. This study compared the quality of life of patients with hemophilia (QoL) and illness behavior in adult patients with haemophilia according to the development of inhibitors and HIV or HCV co-infection. This is an observational clinical study. 69 adult patients with haemophilia participated. We used A36 Hemophilia-QoL and IBQ questionnaires to measure the QoL and illness behavior, respectively. The dependent variables were type and severity of haemophilia, type of treatment, development of inhibitors, HIV and HCV infection, or both. We observed significant differences in the perception of QoL and illness behavior in patients according to the development of inhibitor and coinfection with HIV-HCV. We obtained four groups: the first and second group, which comprise 67% of the sample, exhibit behavior patterns indicating good adaptation to the disease and good QoL. The other two groups, which comprise 33% of the sample show behavior that is not well adapted to the disease, and poor quality of life. The development of inhibitors itself does not influence the quality of life and illness behavior in patients with haemophilia. Patients infected with HIV or HCV do not have a worse illness behavior compared to those uninfected. The development of inhibitors and HIV-HCV co-infection has a negative impact on quality of life and illness behavior in patients with haemophilia.

Review of the Community Residential Care Facilities Program, Department of Health and Environmental Control

This review was predicated on a credible complaint alleging substantial health and safety deficiencies in the care of a resident placed in a Community Residential Care Facility (CRCF) in Kershaw County, South Carolina. Initial investigation with subject matter experts, non-profit advocacy groups, and CRCF inspection reports revealed this single incident might be a symptom of systemic health and safety deficiencies throughout DHEC’s CRCF Program, which regulates 471 CRCFs with the approximately 17,000 vulnerable clients, primarily elderly and disabled. This review’s scope and objectives were: Assess the risk of a vulnerable population of elderly and disabled citizens residing in CRCFs living in unsatisfactory health and safety conditions; Evaluate DHEC’s CRCF Program inspection process capabilities to identify and address CRCFs with unsatisfactory health and safety living conditions; Recommend opportunities to improve the CRCF Program.

El concepto y la práctica de la actividad física y su relación con calidad de vida en los modelos teóricos de la salud

Los estudios acerca del concepto actividad física (AF) son diversos, presentando diferentes concepciones; su relación con calidad de vida suele estar generada dentro del discurso médico, que propende por la ejecución de la Actividad Física desde una mirada netamente biológica. Si bien esta disertación es importante, se debe tener en cuenta que los estudios relacionados con calidad de vida y la AF se basan en la condición de bienestar y percepción frente al estado de salud; dichos estudios no se han realizado desde las condiciones de vida y del contexto social. Si bien es cierto que la mirada médica y lo estudios objetivos son relevantes, ya que arrojan estadísticas que permiten abordar recomendaciones en cuanto a la actividad física, en este documento se elaboró una investigación de tipo cualitativo por medio de la revisión documental del concepto de actividad física, sus prácticas y su relación con calidad de vida, que abordan diferentes autores. Para ello se elige la base de datos PubMed por su énfasis en las publicaciones de salud; se seleccionan artículos publicados del 2004 y 2014, que estudien el concepto de actividad física, sus prácticas y relaciones con calidad de vida, para finalmente hacer un análisis desde los modelos de determinación y determinantes sociales. De esta forma se analiza la posición de los autores con respecto al concepto, sus prácticas y las relaciones que puede llegar a surgir con la calidad de vida. En esta investigación se obtuvo como resultados tendencias biológicas, psicológicas, sociales y culturales, en los cuales los autores dejan clara la posición médica ya que en la mayoría de investigaciones centran sus relaciones en la funcionalidad, y es a través de la visión terapéutica donde buscan el bienestar, la satisfacción de los pacientes que padecen cualquier enfermedad. Además, aparecen categorías emergentes como: cuerpo como medio de publicidad, cibernética que avanza vertiginosamente y el papel del poder en la actividad física que pueden ser contempladas para otros estudios.

El rol de las redes de apoyo transnacional en la evolución del régimen de trata de personas en la región del mekong, 2004-2015

Con el fin de la unipolaridad no sólo se fortalecieron mecanismos de gobernanza global como los Regímenes Internacionales, sino también se fortalecieron actores no estatales. A pesar de la importancia que tomaron estos dos elementos aún no existe una teoría que explique exhaustivamente la relación que existe entre ellos. Es por lo anterior que, la investigación busca responder de qué manera el rol de las Redes de Apoyo Transnacional ha incidido en la evolución del régimen de tráfico de personas en la Región del Mekong. Asimismo tiene como objetivo comprender las relación entre el Régimen y las Redes de Apoyo Transnacional a través de la formulación de un caso de estudio basado en metodologías cualitativas, específicamente, en el análisis teórico-constructivista y el análisis de contenido de documentos producidos por actores estatales y no estatales.

Quality of life in children and adolescents with congenital heart disease. A new challenge for parents, professionals and community

The Quality of life is currently a major topic discussed in our society. The World Health Organization (WHO) has been developing a unifying and transcultural definition of QOL. They considered it as 'the individual's perception of his or her position in life, within the cultural context and value system he or she lives in, and in relation to his or her goals, expectations, parameters and social relations. It is a broad ranging concept affected in a complex way by the person's physical health, psychological state, level of independence, social relationships and their relationship to salient features of their environment (WHOQOL, 1997, p. 1). Congenital heart disease is the most prevalent congenital disease in Portugal. Despite the advances in cardiac treatment and an early correct diagnosis that could increase the survival of children with congenital heart disease, this condition influences the quality of life of children, adolescents and their parents. Knowing the perception of quality of life could help healthcare professionals, nurses in particular, providing suited care to the needs of these families, establishing priorities in their interventions, sensing predictors of a poor quality of life, promoting adherence to treatment and boosting compliance with treatment, and fostering greater satisfaction for these children, adolescents and their parents. Purpose As part of broader research and with the awareness that the chronic conditions could impact the quality of life and considering that all advances on treating congenital cardiac diseases we have defined this main objective: To determine the quality of life in children and adolescents with congenital heart disease (CHD) and the perception of their parents, as well as factors that influence it. Methods It is a quantitative, descriptive and correlational research. The data collection tool was a questionnaire, which consisted of four parts: socio-demographic and educational characteristics, clinical characteristics, and quality of life, obtained using the Pediatric Cardiac Quality of Life Inventory - PCQLI - (Marino, Tomlinson, Wernovsky, Drotar , Newburger, Mahony et al., 2010) translated into Portuguese. Data collection took place between February and July 2014, in compliance with ethical research guidelines. The sample comprised 59 children, 59 parents of children, 80 adolescents and 80 parents of adolescents. Results The results indicated that children, adolescents, and their parents have high level of perceived health. The results are similar in all groups: children and parents and adolescents and parents. In the group of children, we observed the classification of "Good" in 66.10%, followed by the "Very Good" at 18.65% and "fair" in 15.25% of cases. The parents of the children responded in about half the cases that the health of their children was "good" (50.85%), "very good" in 30.51% "fair" in 11.86% and "Excellent "in 6.78%. In turn, the group of adolescents can be seen that 46.25% rate their health as "good", 32.50% as "very good", 16.25% as "Average" and 5% as "Excellent". Parents of teenagers classify the health of their children mostly as "good" in 42.50%, 31.25% as "very good", 20% as "fair" and 6.25% as "excellent". To point out that none of the respondents pointed out the option of a health status "Bad". About the quality of life, in general the results indicated that children, adolescents and their parents have high levels of quality of life, and that perceptions of parents and children are similar. Only in the children's group (8 to 12 years old), was no influence of socio-demographic, school or clinical variables on quality of life observed. For adolescents (13 to 18 years old), school, special education, school retention, the age of diagnosis of congenital heart disease, cardiac catheterization and surgical intervention influenced their quality of life. Perception of quality of life of parents of children and of adolescents was influenced by socio-demographic and clinical variables. The results partly agree with the literature in this field. About the influence of some variables: - The perception of quality of life expressed by children and adolescents with congenital heart disease and parents are related, with statistical significance. - There were no statistically significant relationships between the quality of life of children and adolescents and their age, gender or socioeconomic status. - Adolescents differ statistically significant between their quality of life and their education, the frequency of special education and the existence of grade retention. The severity of heart disease, the number of cardiac catheterizations or surgery and the presence of other health disorders are unrelated to the quality of life of children and adolescents. - Adolescents revealed that the level of quality of life is influenced by the age of diagnosis of CHD by cardiac catheterization and surgery. - For parents of children and adolescents gender and their education don´t influence their perception of quality of life. Only the socioeconomic status of parents of teens has statistically significant difference to quality of life. - Parents of children and adolescents do not show statistically significant relationship between the perceived level of quality of life and severity of disease, age at diagnosis, the number of surgical interventions and the existence of other health disorders. - There is a relationship of statistical significance between cardiac catheterization and the perceived quality of life by parents of adolescents; between the number of cardiac catheterizations and the perception of quality of life of parents of children; and between performing surgery and the perception of parents of children and adolescents. Conclusion To analyze the quality of life of children and adolescents with CHD must be a key focus of attention in caring for this population, allowing the identification of individual differences, interests, preferences, and prevent potential problems. The knowledge acquired along with clinical experience contributes to improve the quality of life of children and families, facilitating their growth, psycho-emotional development and social integration. Nevertheless, the reading and interpretation of these results must be prudent and cautious, there are limitations to this research, including: the use of a range of specific quality of life for the Congenital heart disease in children, adolescents, and parents but whose validation process could not be completed in this study; the low prevalence of severe conditions in our sample; the absence of national studies to enable comparison with the results obtained. We intend to continue the process of validation of instrument and enlarge the research to Lisbon and Oporto, other major centers where the cardiac conditions can be treated

Quality of life in children and adolescents with congenital heart disease

Purpose: The Quality of life is currently a major topic discussed in our society. The World Health Organization (WHO) has been developing a unifying and transcultural definition of QOL. They considered it as 'the individual's perception of his or her position in life, within the cultural context and value system he or she lives in, and in relation to his or her goals, expectations, parameters and social relations. It is a broad ranging concept affected in a complex way by the person's physical health, psychological state, level of independence, social relationships and their relationship to salient features of their environment (WHOQOL, 1997, p. 1). Congenital heart disease is the most prevalent congenital disease in Portugal. Despite the advances in cardiac treatment and an early correct diagnosis that could increase the survival of children with congenital heart disease, this condition influences the quality of life of children, adolescents and their parents. Knowing the perception of quality of life could help healthcare professionals, nurses in particular, providing suited care to the needs of these families, establishing priorities in their interventions, sensing predictors of a poor quality of life, promoting adherence to treatment and boosting compliance with treatment, and fostering greater satisfaction for these children, adolescents and their parents. 'As part of broader research and with the awareness that the chronic conditions could impact the quality of life and considering that all advances on treating congenital cardiac diseases we have defined this main objective: To determine the quality of life in children and adolescents with congenital heart disease (CHD) and the perception of their parents, as well as factors that influence it. Methods: It is a quantitative, descriptive and correlational research. The data collection tool was a questionnaire, which consisted of four parts: socio-demographic and educational characteristics, clinical characteristics, and quality of life, obtained using the Pediatric Cardiac Quality of Life Inventory ? PCQLI - (Marino, Tomlinson, Wernovsky, Drotar , Newburger, Mahony et al., 2010) translated into Portuguese. Data collection took place between February and July 2014, in compliance with ethical research guidelines. The sample comprised 59 children, 59 parents of children, 80 adolescents and 80 parents of adolescents. Results: The results indicated that children, adolescents, and their parents have high level of perceived health. The results are similar in all groups: children and parents and adolescents and parents. In the group of children, we observed the classification of "Good" in 66.10%, followed by the "Very Good" at 18.65% and "fair" in 15.25% of cases. The parents of the children responded in about half the cases that the health of their children was "good" (50.85%), "very good" in 30.51% "fair" in 11.86% and "Excellent "in 6.78%. In turn, the group of adolescents can be seen that 46.25% rate their health as "good", 32.50% as "very good", 16.25% as "Average" and 5% as "Excellent". Parents of teenagers classify the health of their children mostly as "good" in 42.50%, 31.25% as "very good", 20% as "fair" and 6.25% as "excellent". To point out that none of the respondents pointed out the option of a health status "Bad". About the quality of life, in general the results indicated that children, adolescents and their parents have high levels of quality of life, and that perceptions of parents and children are similar. Only in the children?s group (8 to 12 years old), was no influence of socio-demographic, school or clinical variables on quality of life observed. For adolescents (13 to 18 years old), school, special education, school retention, the age of diagnosis of congenital heart disease, cardiac catheterization and surgical intervention influenced their quality of life. Perception of quality of life of parents of children and of adolescents was influenced by socio-demographic and clinical variables. The results partly agree with the literature in this field. About the influence of some variables: The perception of quality of life expressed by children and adolescents with congenital heart disease and parents are related, with statistical significance. There were no statistically significant relationships between the quality of life of children and adolescents and their age, gender or socioeconomic status. Adolescents differ statistically significant between their quality of life and their education, the frequency of special education and the existence of grade retention. The severity of heart disease, the number of cardiac catheterizations or surgery and the presence of other health disorders are unrelated to the quality of life of children and adolescents. Adolescents revealed that the level of quality of life is influenced by the age of diagnosis of CHD by cardiac catheterization and surgery. For parents of children and adolescents gender and their education don?t influence their perception of quality of life. Only the socioeconomic status of parents of teens has statistically significant difference to quality of life. Parents of children and adolescents do not show statistically significant relationship between the perceived level of quality of life and severity of disease, age at diagnosis, the number of surgical interventions and the existence of other health disorders. There is a relationship of statistical significance between cardiac catheterization and the perceived quality of life by parents of adolescents; between the number of cardiac catheterizations and the perception of quality of life of parents of children; and between performing surgery and the perception of parents of children and adolescents. Conclusion: To analyze the quality of life of children and adolescents with CHD must be a key focus of attention in caring for this population, allowing the identification of individual differences, interests, preferences, and prevent potential problems. The knowledge acquired along with clinical experience contributes to improve the quality of life of children and families, facilitating their growth, psycho-emotional development and social integration. Nevertheless, the reading and interpretation of these results must be prudent and cautious, there are limitations to this research, including: the use of a range of specific quality of life for the Congenital heart disease in children, adolescents, and parents but whose validation process could not be completed in this study; the low prevalence of severe conditions in our sample; the absence of national studies to enable comparison with the results obtained. We intend to continue the process of validation of instrument and enlarge the research to Lisbon and Oporto, other major centers where the cardiac conditions can be treated.

UT Austin | Portugal Workshop on Nonlinear Mechanics and Applications in Life Sciences

This is a CoLab Workshop organized as an initiative of the UT Austin | Portugal Program to reinforce the Portuguese competences in Nonlinear Mechanics and in complex problems arising from applications to the mathematical modeling and simulations in the Life Sciences. The Workshop provides a place to exchange recent developments, discoveries and progresses in this challenging research field. The main goal is to bring together doctoral candidates, postdoctoral scientists and graduates interested in the field, giving them the opportunity to make scientific interactions and new connections with established experts in the interdisciplinary topics covered by the event. Another important goal of the Workshop is to promote collaboration between members of the different areas of the UT Austin | Portugal community.