A Disease Register for ME/CFS: Report of a Pilot Study.

BACKGROUND: The ME/CFS Disease Register is one of six subprojects within the National ME/CFS Observatory, a research programme funded by the Big Lottery Fund and sponsored by Action for ME. A pilot study in East Anglia, East Yorkshire, and London aimed to address the problem of identifying representative groups of subjects for research, in order to be able to draw conclusions applicable to the whole ME/CFS population.While not aiming for comprehensive population coverage, this pilot register sought to recruit participants with ME/CFS in an unbiased way from a large population base. Those recruited are constituting a cohort for long-term follow-up to shed light on prognosis, and a sampling frame for other studies. FINDINGS: Patients with unidentified chronic fatigue were identified in GP databases using a READ-code based algorithm, and conformity to certain case definitions for ME/CFS determined. 29 practices, covering a population aged 18 to 64 of 143,153, participated.510 patients with unexplained chronic fatigue were identified. 265 of these conformed to one or more case definitions. 216 were invited to join the register; 160 agreed. 96.9% of participants conformed to the CDC 1994 (Fukuda) definition; the Canadian definition defined more precisely a subset of these. The addition of an epidemiological case definition increased case ascertainment by approximately 4%. A small-scale study in a specialist referral service in East Anglia was also undertaken.There was little difference in pattern of conformity to case definitions, age or sex among disease register participants compared with subjects in a parallel epidemiological study who declined to participate.One-year follow-up of 50 subjects showed little change in pain or fatigue scores. There were some changes in conformity to case definitions. CONCLUSIONS: Objective evaluation indicated that the aim of recruiting participants with ME/CFS to a Disease Register had been fulfilled, and confirmed the feasibility of our approach to case identification, data processing, transmission, storage, and analysis. Future developments should include expansion of the ME/CFS Register and its linkage to a tissue sample bank and post mortem tissue archive, to facilitate support for further research studies

Social inequalities in cesarean section rates in primiparae, Southern Brazil

OBJECTIVE: To investigate the effect of social inequalities in cesarean section rates among primiparae having single pregnancy and delivering in maternity hospitals. METHODS: The study was carried out in Southern Brazil in 1996, 1998 and 2000. Data from the Live Birth National Information System were used to estimate annual rates and crude and adjusted odds ratios (OR) of cesarean sections according to social conditions (maternal age and education, newborn skin color/ethnicity and macro-regions), duration of pregnancy, and number of prenatal visits. RESULTS: The overall cesarean section rate was 45%, and above 37% in all macro-regions. Increased rates were seen among native and black mothers, aged 30 years or more, living in metropolitan, river valley and mountain macro-regions and having attended to more than six prenatal visits. Crude and adjusted OR show that cesarean rates were negatively associated with all categories of skin color/ethnicity when compared to white newborns, particularly those of native Brazilian (ORadj=0.43; 95% CI: 0.31-0.59), and they were positively associated with higher maternal education (ORadj=3.52; 95% CI: 3.11-3.99), older age (ORadj=6.87; 95% CI: 5.90-8.00) and greater number of prenatal visits (ORadj=2.16; 95% CI: 1.99-2.35). The effects of age and education were partly mediated by the greater number of prenatal visits among higher educated older women. The OR varied among macro-regions but were greater for the wealthier mountain region. CONCLUSIONS: High rates of cesarean section rates in Southern Brazil are a public health concern. They are associated with social, economic and cultural factors which can lead to misuse of medical technology during labor and delivery.OBJETIVO: Investigar o efeito das desigualdades sociais nas taxas de cesariana em primíparas, com gravidez única e parto hospitalar. MÉTODOS: Estudo realizado no Estado do Rio Grande do Sul em 1996, 1998 e 2000. Foram utilizados dados do Sistema de Informação de Nascidos Vivos no cálculo das taxas anuais e das razões de chance de cesariana (RC) brutas e ajustadas para condições sociais (escolaridade e idade maternas, etnia/cor da pele e macro-regional de saúde), duração da gestação e número de consultas pré-natal. RESULTADOS: A taxa de cesarianas foi de 45%, e acima de 37% para todas as macro-regionais. As taxas aumentaram entre: mulheres de etnia indígena e negra, mulheres com mais de 30 anos, residentes nas macro-regiões Metropolitana, Vales e Serra, e com mais de seis consultas no pré-natal. Razões brutas e ajustadas indicaram taxas negativamente associadas para todas as categorias de etnia/cor, quando comparadas à cor branca da pele do recém-nascido, em especial para etnia indígena (RCaj=0,43; IC 95%: 0,31-0,59), positivamente associadas à escolaridade (RCaj=3,52; IC 95%: 3,11-3,99) e idade maternas mais elevadas (RCaj=6,87; IC 95%: 5,90-8,00), e maior número de consultas pré-natal (RCaj=2,16; IC 95%: 1,99-2,35). Os efeitos de idade e escolaridade mostraram estar parcialmente mediados pelo maior número de consultas pré-natal nas mulheres com idade e escolaridade mais elevadas. As taxas variaram entre as macro-regionais, sendo maiores na região da Serra, economicamente mais rica. CONCLUSÕES: Altas taxas de cesariana no sul do Brasil constituem problema de saúde pública e estão associadas a fatores sociais, econômicos e culturais, os quais podem levar ao mau-uso da tecnologia médica na atenção ao parto

Community Action Research in Disability (CARD): An Inclusive Research Programme in Uganda

The ideology of Emancipatory Disability Research (EDR) reflected in the phrase ‘Nothing about us without us’, was first put forward in the 1990s. Although it aimed to place research control in the hands of the ‘researched’, i.e., people with disability, this rarely happens even today, 25 years later. The Community Action Research on Disability (CARD) programme in Uganda embraced and modified the EDR approach, recognising the need for including people with disability in the research process from concept to outcome, and nurturing participation and collaboration between all the stakeholders in achieving action-based research. The research teams always included people with disability and staff from Disabled People’s Organisations (DPOs) as well as academics and service providers. It endeavoured to generate and carry out research around issues that mattered to people with disability and their families. Leadership roles were assigned by team members. The objectives of the CARD programme were: (1) to fund teams to carry out action-based research on disability in Uganda; (2) to develop research and administrative capacity to manage the initiative within the academic registrar’s office at Kyambogo University; (3) to incorporate new knowledge generated from the studies into the ongoing local community-based rehabilitation and special education courses; and, (4) to ensure wide dissemination of research findings to all stakeholder groups. CARD ran for 5 years, commissioning 21 action research studies in the field of disability and community-based services. This paper describes the process, presents the 12 completed studies, examines the extent to which the objectives were achieved and evaluates the experiences of the participating research teams, particularly in relation to the inclusion of its members with disability. It concludes with recommendations for future initiatives designed to promote validity, good value and inclusive approaches in disability research

Community Action Research in Disability (CARD): An Inclusive Research Programme in Uganda

The ideology of Emancipatory Disability Research (EDR) reflected in the phrase ‘Nothing about us without us’, was first put forward in the 1990s. Although it aimed to place research control in the hands of the ‘researched’, i.e., people with disability, this rarely happens even today, 25 years later. The Community Action Research on Disability (CARD) programme in Uganda embraced and modified the EDR approach, recognising the need for including people with disability in the research process from concept to outcome, and nurturing participation and collaboration between all the stakeholders in achieving action-based research. The research teams always included people with disability and staff from Disabled People’s Organisations (DPOs) as well as academics and service providers. It endeavoured to generate and carry out research around issues that mattered to people with disability and their families. Leadership roles were assigned by team members. The objectives of the CARD programme were: (1) to fund teams to carry out action-based research on disability in Uganda; (2) to develop research and administrative capacity to manage the initiative within the academic registrar’s office at Kyambogo University; (3) to incorporate new knowledge generated from the studies into the ongoing local community-based rehabilitation and special education courses; and, (4) to ensure wide dissemination of research findings to all stakeholder groups. CARD ran for 5 years, commissioning 21 action research studies in the field of disability and community-based services. This paper describes the process, presents the 12 completed studies, examines the extent to which the objectives were achieved and evaluates the experiences of the participating research teams, particularly in relation to the inclusion of its members with disability. It concludes with recommendations for future initiatives designed to promote validity, good value and inclusive approaches in disability research

MOTIVAÇÃO DE PACIENTES HOSPITALIZADOS PARA EVITAR O CONSUMO EXCESSIVO DE BEBIDAS ALCOÓLICAS

Esta investigación tuvo como objetivo determinar las variables asociadas a la motivación de pacienteshospitalizados a fin de evitar el consumo excesivo de bebidas alcohólicas. Se trata de un estudio transversal, en el cualparticiparon 1.050 pacientes de sexo masculino con edades entre 21 y 70 años, hospitalizados en tres hospitales de laciudad de Pelotas, en el período de 1 de noviembre de 2000 al 15 de junio de 2001. La colecta de datos fue realizada mediantela aplicación de cuestionarios. Los hallazgos revelaron que 180 pacientes fueron bebedores excesivos, predominando,entre ellos, las personas con menos poder adquisitivo y de alta faja etaria. Ya, los más jóvenes se mostraron pocomotivados para evitar tal hábito, por ese motivo, ese grupo debe ser considerado meta prioritaria de las intervencionesrealizadas por los profesionales de la salud, a fin de posibilitar su sensibilización acerca de los trastornos causadas por elabuso del alcohol.This research aimed to determine the variables associated to the motivation of inpatients to avoid excessiveconsumption of alcoholic beverages. This is a cross-sectional study in which participated 1.050 male patients agedbetween 21 and 70 years, hospitalized in three hospitals of the city of Pelotas, in the period from November 1st, 2000 toJune 15th, 2001. Data collection was performed by the application of questionnaires. The findings revealed that 180patients were excessive drinkers, predominating, among them, people with less economic power and higher age group. Bythe other hand, the younger group presented itself less motivated to avoid such habits. Therefore, that group must beconsidered a priority target from interventions performed by health professionals, in order to enable their awareness aboutthe inconvenience caused by the abuse of alcohol.Esta pesquisa visou a determinar as variáveis associadas à motivação de pacientes hospitalizados para evitaro consumo excessivo de bebidas alcoólicas. Trata-se de um estudo transversal, do qual participaram 1.050 pacientes dosexo masculino com idade entre 21 e 70 anos, internados em três hospitais da cidade de Pelotas, no período de 1° denovembro de 2000 a 15 de junho de 2001. A coleta dos dados foi realizada através da aplicação de questionários. Osachados revelaram que 180 pacientes eram bebedores excessivos, predominando, entre eles, as pessoas com menor poderaquisitivo e elevada faixa etária. Já os mais jovens mostraram-se pouco motivados para evitar tal hábito; por esse motivo,tal grupo deve ser considerado alvo prioritário das intervenções realizadas pelos profissionais de saúde, a fim de possibilitarsua sensibilização quanto aos transtornos ocasionados pelo abuso do álcool

Desigualdades socioeconómicas y regionales en la cobertura de exámenes citopatológicos del cuello uterino

Objetivos: Identifi car desigualdades socioeconômicas e regionais na cobertura de exames citopatológicos do colo do útero no Rio Grande do Sul. Métodos: Estudo ecológico utilizou dados dos sistemas de informação em saúde de 2011-2012 para estimar coberturas anuais de exames para todas as mulheres residentes e para as não benefi ciárias de planos privados de saúde. Desigualdades na cobertura foram estimadas conforme o Índice de Vulnerabilidade Social Municipal, macrorregiões e regiões de saúde. Resultados: A prevalência de mulheres não benefi ciarias de planos privados de saúde variou de 38,1% a 94,2% entre regiões de saúde. A cobertura estadual foi 17,3% para todas as residentes e 23,8% para as não benefi ciárias de planos privados. As maiores coberturas ocorreram nos municípios em maior vulnerabilidade social e nas regiões com maior prevalência de planos privados. Conclusões: A prevalência de planos privados de saúde deve ser considerada em estudos da cobertura de serviços pelo Sistema Único de Saúde.Objectives: To identify socioeconomic and regional inequalities of pap smear coverage in the state of Rio Grande do Sul. Methods: An ecological study based on data of the 2011-2012 national health information system to estimate the annual coverage of pap smears for the overall female population of the state and for women without private health insurance. We estimated annual pap smear coverage according to the Municipal Social Vulnerability Index and health macro-regions and regions of the state. Results: The percentage of women without private health insurance ranged from 38.1% to 94.2% in the health regions. Pap smear coverage was 17.3% for the overall female population and 23.8% for women without private health insurance. Pap smear coverage was higher in more socially vulnerable municipalities and regions with a higher percentage of women with private health insurance. Conclusions: The prevalence of private health insurance should be considered in studies that address the coverage of the Brazilian Unifi ed Health System (SUS).Objetivos: Identifi car desigualdades socioeconómicas y regionales en la cobertura de exámenes citopatológicos del cuello uterino en Rio Grande do Sul. Métodos: Estudio ecológico utilizó datos de los sistemas de información en salud de 2011-2012 para estimar coberturas anuales de exámenes para la totalidad de mujeres residentes y para no benefi ciarias de planes privados de salud. Se estimaron las desigualdades según el Índice de Vulnerabilidad Social Municipal, las macroregiones y las regiones de salud. Resultados: La prevalencia de mujeres no benefi ciarias de planes privados de salud tuvo una variación de 38.1% a 94.2% entre las regiones de salud. La cobertura del estado fue de 17.3% para la totalidad de residentes y el 23.8% para no benefi ciarias de planes privados. Las mayores coberturas sucedieron en los municipios de mayor vulnerabilidad social y regiones con mayor prevalencia de planes privados. Conclusiones: La prevalencia de los planes privados de salud debe ser considerada en los estudios de cobertura de servicios del Sistema Único de Salud (SUS)

Desigualdades socioeconômicas e regionais na cobertura de exames citopatológicos do colo do útero

Objetivos: Identificar desigualdades socioeconômicas e regionais na cobertura de exames citopatológicos do colo do útero no Rio Grande do Sul.Métodos: Estudo ecológico utilizou dados dos sistemas de informação em saúde de 2011-2012 para estimar coberturas anuais de exames para todas as mulheres residentes e para as não beneficiárias de planos privados de saúde. Desigualdades na cobertura foram estimadas conforme o Índice de Vulnerabilidade Social Municipal, macrorregiões e regiões de saúde.Resultados: A prevalência de mulheres não beneficiarias de planos privados de saúde variou de 38,1% a 94,2% entre regiões de saúde. A cobertura estadual foi 17,3% para todas as residentes e 23,8% para as não beneficiárias de planos privados. As maiores coberturas ocorreram nos municípios em maior vulnerabilidade social e nas regiões com maior prevalência de planos privados.Conclusões: A prevalência de planos privados de saúde deve ser considerada em estudos da cobertura de serviços pelo Sistema Único de Saúde.Palavras-chave: Desigualdades em saúde. Prevenção de câncer de colo uterino. Cobertura de serviços públicos de saúde

Comparison between observed children's tooth brushing habits and those reported by mothers

<p>Abstract</p> <p>Background</p> <p>Information bias can occur in epidemiological studies and compromise scientific outcomes, especially when evaluating information given by a patient regarding their own health. The oral habits of children reported by their mothers are commonly used to evaluate tooth brushing practices and to estimate fluoride intake by children. The aim of the present study was to compare observed tooth-brushing habits of young children using fluoridated toothpaste with those reported by mothers.</p> <p>Methods</p> <p>A sample of 201 mothers and their children (aged 24-48 months) from Montes Claros, Brazil, took part in a cross-sectional study. At day-care centres, the mothers answered a self-administered questionnaire on their child's tooth-brushing habits. The structured questionnaire had six items with two to three possible answers. An appointment was then made with each mother/child pair at day-care centres. The participants were asked to demonstrate the tooth-brushing practice as usually performed at home. A trained examiner observed and documented the procedure. Observed tooth brushing and that reported by mothers were compared for overall agreement using Cohen's Kappa coefficient and the McNemar test.</p> <p>Results</p> <p>Cohen's Kappa values comparing mothers' reports and tooth brushing observed by the examiner ranged from poor-to-good (0.00-0.75). There were statistically significant differences between observed tooth brushing habits and those reported by mothers (p < 0.001). When observed by the examiner, the frequencies of dentifrice dispersed on all bristles (35.9%), children who brushed their teeth alone (33.8%) and those who did not rinse their mouths during brushing (42.0%) were higher than those reported by the mothers (12.1%, 18.9% and 6.5%, respectively; p < 0.001).</p> <p>Conclusions</p> <p>In general, there was low agreement between observed tooth brushing and mothers' reports. Moreover, the different methods of estimation resulted in differences in the frequencies of tooth brushing habits, indicative of reporting bias. Data regarding children's tooth-brushing habits as reported by mothers should be considered with caution in epidemiological surveys on fluoridated dentifrice use and the risk of dental fluorosis.</p