BackgroundThe ability to apply standard and interoperable solutions for implementing and managing medical registries as well as aggregate, reproduce, and access data sets from legacy formats and platforms to advanced standard formats and operating systems are crucial for both clinical healthcare and biomedical research settings.PurposeOur study describes a reproducible, highly scalable, standard framework for a device registry implementation addressing both local data quality components and global linking problems.Methods and ResultsWe developed a device registry framework involving the following steps: (1) Data standards definition and representation of the research workflow, (2) Development of electronic case report forms using REDCap (Research Electronic Data Capture), (3) Data collection according to the clinical research workflow and, (4) Data augmentation by enriching the registry database with local electronic health records, governmental database and linked open data collections, (5) Data quality control and (6) Data dissemination through the registry Web site. Our registry adopted all applicable standardized data elements proposed by American College Cardiology / American Heart Association Clinical Data Standards, as well as variables derived from cardiac devices randomized trials and Clinical Data Interchange Standards Consortium. Local interoperability was performed between REDCap and data derived from Electronic Health Record system. The original data set was also augmented by incorporating the reimbursed values paid by the Brazilian government during a hospitalization for pacemaker implantation. By linking our registry to the open data collection repository Linked Clinical Trials (LinkedCT) we found 130 clinical trials which are potentially correlated with our pacemaker registry.ConclusionThis study demonstrates how standard and reproducible solutions can be applied in the implementation of medical registries to constitute a re-usable framework. Such approach has the potential to facilitate data integration between healthcare and research settings, also being a useful framework to be used in other biomedical registries.
Objectives: Identify the occurrence of depressive symptoms in family caregivers of patients with heart failure and the correlation of other variables with depressive symptoms.Design/Method: The literature review was conducted in the Web of Science, Medline, LILACS and PubMed databases in March 2017. Papers published between 2004 and 2016, written in English, Spanish or Portuguese were included. The descriptors used were health, heart failure, depression, caregivers, and family.Results: 26 papers were selected. 6% to 64% reported depressive symptoms. Depressive symptoms were associated with patients' and caregivers' characteristics. In most cases, depressive symptoms were greater among family caregivers than in the general population and were mainly associated with care burden and quality of life. Conclusions:The studies report depressive symptoms in caregivers of patients with heart failure.Objetivos: Identificar a ocorrência de depressão em cuidadores familiares de pacientes com insuficiência cardíaca e a correlação de outras variáveis com a depressão.Método: A busca bibliográfica foi realizada nas bases de dados Web of Science, Medline, LILACS e PubMed, em março de 2017. Artigos publicados entre 2004 e 2016, escritos em inglês, espanhol ou português, utilizando os descritores saúde, insuficiência cardíaca, depressão, cuidadores e familiares foram incluídos.Resultados: Foram selecionados 26 trabalhos. 6% a 64% reportaram sintomas depressivos. Os sintomas depressivos foram associados com as características dos pacientes e cuidadores. Em sua maioria, os sintomas depressivos foram maiores entre os cuidadores familiares que a população em geral e se relacionou principalmente com a sobrecarga do cuidado e a qualidade de vida. Conclusão:Os estudos identificaram sintomas depressivos nos cuidadores de pacientes com insuficiência cardíaca. Palavras-chave: Insuficiência cardíaca. Depressão. Família. Cuidadores. RESUMEN Objetivos: Identificar la ocurrencia de síntomas depressivos en los cuidadores familiares de pacientes con insuficiencia cardíaca y la correlación de otras variables con los síntomas depressivos. Diseño / Método: La búsqueda bibliográfica se realizó en las bases de datos Web of Science, Medline, LILACS y PubMed en marzo de 2017. Se incluyeron artículos publicados entre 2004 y 2016, escritos en inglés, español o portugués, utilizando los descriptores de salud, insuficiencia cardíaca, depresión, cuidadores y familia.Resultados: Se seleccionaron 26 trabajos. De 6% a 64% reportaron síntomas depresivos. Los síntomas depressivos se asociaron a características de pacientes y cuidadores. En la mayoría de los casos, los síntomas depresivos fueron mayores entre los cuidadores familiares que en la población general y se relacionaron principalmente con la carga asistencial y la calidad de vida. Conclusiones:Los estudios identificaron síntomas depresivos en los cuidadores de pacientes con insuficiencia cardiaca.
Objective: Identifying the level of anxiety, stress and depression symptoms in family members of patients with heart failure; identifying the relationship between these feelings with sociodemographic and clinical variables. Method: A cross-sectional study carried out with 100 family members. Depression, anxiety, and stress were evaluated by the Beck Depression and Anxiety Inventories and the Perceived Stress Scale -10. The relationship between feelings and variables was performed through the t-test, Mann-Whitney or Kruskal-Wallis. Results: Mean depression was 8.24, anxiety was 77.95, and stress was 17.43. The correlation coefficient between depression and anxiety and depression and stress was 0.53, and it was 0.66 between anxiety and stress. Females (p=0.002, p=0.031), smoking (p=0.05, p=0.011) and sedentary lifestyle (p=0.023, p=0.001) were related to anxiety and stress, respectively. Family income lower than five minimum wages (p=0.012) was related to depression, and regular/poor self-perceived health status related to the three feelings. Conclusion: Family members did not present high levels of these feelings. The scales were directly correlated with each one another and some variables were related to stress, anxiety and depression. DESCRIPTORS Heart Failure; Family; Anxiety; Stress, Phychological; Depression; Cardiovascular Nursing.Anxiety, stress and depression in family members of patients with heart failure* Ansiedade, estresse e depressão de familiares de pacientes com insuficiência cardíaca Ansiedad, estrés y depresión de familiares de pacientes con insuficiencia cardiaca INTRODUCTIONHeart failure (HF) is the final pathway for various heart diseases representing a major public health problem. According to data from DataSUS, circulatory system diseases were the third leading cause of hospital admission in 2015 (1) . HF is a chronic disease responsible for the greatest number of hospitalizations within the group of circulatory system diseases (1) . An individual affected by a chronic disease such as HF experiences changes in their daily life which are caused by the disease itself (2) , such as changes related to the use of medicines (start taking, changing or increasing number of medications), frequent consultations and recurrent hospitalizations.Such changes to a patient's lifestyle directly influence their family members' living habits, who represent necessary support to the patient for better coping with the disease. It is known that caregivers directly and indirectly contribute to monitoring, maintenance and management of patient self-care (3) . Therefore, understanding psychosocial factors (depression, anxiety and stress) that may be present in family members and understanding the context in which the patient and family are inserted becomes important.It is known that family members may experience negative experiences/situations arising from care which encompass physical and psychological aspects. A study showed that family member caregivers present musculoskeletal and sleep disorders, fatigu...
Chronic RV pacing did not affect the HRQoL and physical capacity of pediatrics and young subjects. Female gender, ventricular function, and cardiovascular drugs were associated with lower HRQoL scores. Older subjects walked shorter distances in the 6MWDT, as well as subjects who were taking cardiovascular drugs.
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