Development and validation of educational hypermedia for family members and caregivers of people with epidermolysis bullosa.

OBJECTIVES: to develop educational hypermedia to support the care of people with epidermolysis bullosa; and validate its content, functionality, usability, and efficiency. METHODS: methodological study, based on five phases: analysis and planning; modeling; implementation; evaluation; and distribution. Hypermedia was evaluated by expert judges, using the content validity index, index of agreement, and exact binomial distribution test, considering p > 0.05 and 0.80 agreement ratio to estimate the statistical reliability of CVI and IOA. RESULTS: in the validation with the judges, hypermedia presented excellent indices of total content validity (CVIt=0.99) and agreement for functionality, usability, and efficiency (IOA=100%), with p > 0.05 in all evaluated items. CONCLUSIONS: the developed hypermedia was considered adequate, with good screens, descriptions, and animations, presenting itself clearly and objectively to be used by patients with epidermolysis bullosa and their family members/caregivers.

Algoritmo de Indicação de Equipamento Coletor para Estomias / Algorithm for Indication of Collector Equipment for Stomas / Algoritmo para la Indicación de Equipos Colectores para Estomas

Objetivo:Relatar a experiência de uma equipe de enfermeiros estomaterapeutas na construção de um algoritmo para a indicação de equipamento coletor para estomias de eliminação. Método: Relato de experiência, do período de janeiro de 2018 a setembro de 2019, sobre o processo de construção de um algoritmo para indicação de equipamento coletor para estomias de eliminação. Resultados: A partir de determinadas características clínicas (parâmetros de avaliação) e da categorização dos equipamentos coletores (solução), foi desenvolvido um algoritmo para indicação de equipamento coletor para estomias de eliminação. Conclusão: Espera-se que esse instrumento possa auxiliar os enfermeiros na sua prática profissional quanto à escolha do equipamento coletor e na construção de protocolos clínicos.

Objective:To report the experience of a team of enterostomal therapists in the construction of an algorithm for the indication of collecting equipment for elimination stomas. Method: Experience report, from January 2018 to September 2019, on the process of building an algorithm to indicate collecting equipment for elimination stomas. Results: Based on certain clinical characteristics (assessment parameters) and the categorization of collecting equipment (solution), an algorithm was developed to indicate collecting equipment for elimination stomas. Conclusion: It is expected that this instrument can help nurses in their professional practice regarding the choice of collecting equipment and the construction of clinical protocols.

Objetivo:Relatar la experiencia de un equipo de enfermeros estomaterapeutas en la construcción de un algoritmo para la indicación de equipos recolectores para estomas de eliminación. Método: Informe de experiencia, de enero de 2018 a septiembre de 2019, sobre el proceso de construcción de un algoritmo para indicar equipos colectores para estomas de eliminación. Resultado: A partir de ciertas características clínicas (parámetros de evaluación) y la categorización de los equipos colectores (solución), se desarrolló un algoritmo para indicar equipos colectores para estomas de eliminación. Conclusión: Se espera que este instrumento pueda ayudar a los enfermeros en su práctica profesional en cuanto a la elección de equipos de recolección y la construcción de protocolos clínicos.

Development and validation of educational hypermedia for family members and caregivers of people with epidermolysis bullosa / Desarrollo y validación de hipermedia educativa para familiares y cuidadores de personas con epidermólisis ampollosa / Desenvolvimento e validação de hipermídia educativa para familiares e cuidadores de pessoas com epidermólise bolhosa

ABSTRACT Objectives: to develop educational hypermedia to support the care of people with epidermolysis bullosa; and validate its content, functionality, usability, and efficiency. Methods: methodological study, based on five phases: analysis and planning; modeling; implementation; evaluation; and distribution. Hypermedia was evaluated by expert judges, using the content validity index, index of agreement, and exact binomial distribution test, considering p > 0.05 and 0.80 agreement ratio to estimate the statistical reliability of CVI and IOA. Results: in the validation with the judges, hypermedia presented excellent indices of total content validity (CVIt=0.99) and agreement for functionality, usability, and efficiency (IOA=100%), with p > 0.05 in all evaluated items. Conclusions: the developed hypermedia was considered adequate, with good screens, descriptions, and animations, presenting itself clearly and objectively to be used by patients with epidermolysis bullosa and their family members/caregivers.

RESUMEN Objetivo: desarrollar una hipermedia educativa para fundamentar los cuidados a la persona con epidermólisis ampollosa; y validar su contenido, funcionalidad, usabilidad y eficiencia. Métodos: estudio metodológico, fundamentado en cinco fases: Análisis y planeamiento; Modelado; Implementación; Evaluación; y Distribución. La hipermedia fue evaluada por jueces especialistas, mediante los testes de índice de validez de contenido, índice de concordancia y test exacto de distribución binomial, considerando p > 0,05 y proporción de 0,80 de concordancia para estimar la confiabilidad estadística del IVC e IC. Resultados: en la validación con los jueces, la hipermedia presentó excelentes índices de validez de contenido total (IVCt=0,99) y concordancia para funcionalidad, usabilidad y eficiencia (IC=100%), con p > 0,05 en todos los ítems evaluados. Conclusiones: la hipermedia desarrollada fue considerada adecuada, con buenas pantallas, descripciones y animaciones, presentándose de manera clara y objetiva para ser utilizada por los pacientes con epidermólisis ampollosa y sus familiares/cuidadores.

RESUMO Objetivos: desenvolver uma hipermídia educativa para fundamentar os cuidados à pessoa com Epidermólise Bolhosa, e validar seu conteúdo, funcionalidade, usabilidade e eficiência. Método: estudo metodológico, fundamentado em cinco fases: Análise e planejamento; Modelagem; Implementação; Avaliação e Distribuição. A hipermídia foi avaliada por juízes especialistas, por meio dos testes de Índice de Validade de conteúdo, Índice de Concordância e Exato de Distribuição Binomial, considerando p>0,05 e proporção de 0,80 de concordância para estimar a confiabilidade estatística dos IVC e IC. Resultados: na validação com os juízes, a hipermídia apresentou excelentes índices de validade de conteúdo total (IVCt=0,99) e concordância para funcionalidade, usabilidade e eficiência (IC=100%), com p>0,05 em todos os itens avaliados. Conclusões: a hipermídia desenvolvida foi considerada adequada, com boas telas, descrições e animações, apresentando-se de forma clara e objetiva para ser utilizada pelos pacientes com epidermólise bolhosa e seus familiares/cuidadores.

NAD(P)H oxidase and multidrug resistance protein genetic polymorphisms are associated with doxorubicin-induced cardiotoxicity.

BACKGROUND: A significant number of patients treated with anthracyclines develop cardiotoxicity (anthracycline-induced cardiotoxicity [ACT]), mainly presenting as arrhythmias (acute ACT) or congestive heart failure (chronic ACT). There are no data on pharmacogenomic predictors of ACT. METHODS AND RESULTS: We genotyped participants of the German non-Hodgkin lymphoma study (NHL-B) who were followed up for the development of heart failure for a median of >3 years. Single-nucleotide polymorphisms (SNPs) were selected from 82 genes with conceivable relevance to ACT. Of 1697 patients, 55 developed acute and 54 developed chronic ACT (cumulative incidence of either form, 3.2%). We detected 5 significant associations with polymorphisms of the NAD(P)H oxidase and doxorubicin efflux transporters. Chronic ACT was associated with a variant of the NAD(P)H oxidase subunit NCF4 (rs1883112, -212A-->G; symbols with right-pointing arrows, as edited?' odds ratio [OR], 2.5; 95% CI, 1.3 to 5.0). Acute ACT was associated with the His72Tyr polymorphism in the p22phox subunit (rs4673; OR, 2.0; 95% CI, 1.0 to 3.9) and with the variant 7508T-->A (rs13058338; OR, 2.6; 95% CI, 1.3 to 5.1) of the RAC2 subunit of the same enzyme. In agreement with these results, mice deficient in NAD(P)H oxidase activity, unlike wild-type mice, were resistant to chronic doxorubicin treatment. In addition, acute ACT was associated with the Gly671Val variant of the doxorubicin efflux transporter multidrug resistance protein 1 (MRP1) (OR, 3.6; 95% CI, 1.6 to 8.4) and with the Val1188Glu-Cys1515Tyr (rs8187694-rs8187710) haplotype of the functionally similar MRP2 (OR, 2.3; 95% CI, 1.0 to 5.4). Polymorphisms in adrenergic receptors previously demonstrated to be predictive of heart failure were not associated with ACT. CONCLUSIONS: Genetic variants in doxorubicin transport and free radical metabolism may modulate the individual risk to develop ACT.