[Multimorbidity in Portugal: Results from The First National Health Examination Survey]. / Multimorbilidade em Portugal: Dados do Primeiro Inquérito Nacional de Saúde com Exame Físico.

INTRODUCTION: The simultaneous presence of multiple chronic diseases in the same individual is recognized as an important public health problem. Patients with multimorbidity have greater healthcare needs, which represents a higher burden on health services. Although there is no consensual definition of this concept, multimorbidity is usually defined as the presence of two or more chronic diseases in the same patient. The existence of evidence regarding multimorbidity will lead to more efficient management and treatment of these patients. MATERIAL AND METHODS: In order to estimate the prevalence of multimorbidity and to identify the associated factors, a cross-sectional epidemiological study was developed based on data from the INSEF, a population-based survey conducted on a representative probability sample of the Portuguese population (n = 4911). The prevalence of multimorbidity was estimated for the total population and separately for men and women, stratified by age group, region, education and income. The magnitudes of the associations were measured by the adjusted prevalence ratios calculated by the Poisson regression model. RESULTS: Prevalence of multimorbidity was 38.3% (95% CI: 35.4% to 41.3%), with higher frequency in women, older people, Lisbon and Tagus Valley; Northern Portugal; Algarve and Alentejo regions and in those with lower academic qualifications. No association was found between multimorbidity and income. DISCUSSION: Multimorbidity affects more than one third of the Portuguese population. Epidemiological data about multimorbidity in Portugal allows the identification of population groups with higher multimorbidity prevalence. CONCLUSION: Our results, which highlight the greater risk of multimorbidity among older and less instructed people, are in line with the literature. These results show the relevance of multimorbidity patients and are especially important in the way how healthcare is organized and provided.

Introdução: A presença de múltiplas doenças crónicas, em simultâneo, no mesmo indivíduo é um problema de saúde reconhecido. Os doentes com multimorbilidade têm necessidades de saúde acrescidas, o que representa um ónus elevado para os cuidados de saúde. Embora não exista uma definição consensual do conceito, a multimorbilidade é definida habitualmente pela presença de duas ou mais doenças crónicas. A existência de evidência, para a realidade nacional, quanto à multimorbilidade poderá contribuir para a gestão e tratamento destes doentes de forma mais eficiente. Material e Métodos: Com o objetivo de estimar a prevalência de multimorbilidade e identificar os fatores associados foi realizado um estudo epidemiológico transversal com base nos dados do INSEF, um inquérito de base populacional desenvolvido com uma amostra probabilística representativa da população portuguesa (n = 4911). A prevalência de multimorbilidade foi estimada para o total da população e para cada um dos sexos, estratificada por grupo etário, região de saúde, educação e rendimento. As magnitudes das associações foram medidas pelas razões de prevalências ajustadas calculadas pelo modelo de regressão de Poisson. Resultados: A prevalência de multimorbilidade foi de 38,3% (IC 95%: 35,4% a 41,3%), com maior frequência nas mulheres, nos indivíduos mais velhos, nas regiões de Lisboa e Vale do Tejo, Norte, Algarve e Alentejo e em níveis educacionais mais baixos. Não foi observada associação estatisticamente significativa entre a multimorbilidade e o rendimento. Discussão: A multimorbilidade é um problema que afeta mais de um terço da população portuguesa. O conhecimento epidemiológico sobre a multimorbilidade em Portugal permite identificar os grupos populacionais onde esta realidade é mais prevalente. Conclusão: Os valores observados apontam para maior risco de multimorbilidade entre os indivíduos mais velhos e menos diferenciados e está em consonância com os resultados da literatura. Estes dados demonstram a relevância dos doentes com multimorbilidade e têm especial importância na forma com os cuidados de saúde são organizados e prestados.

The ethics of feedback of HIV test results in population-based surveys of HIV infection.

Population-based disease prevalence surveys raise ethical questions, including whether participants should be routinely told their test results. Ethical guidelines call for informing survey participants of any clinically relevant finding to enable appropriate management. However, in anonymous surveys of human immunodeficiency virus (HIV) infection, participants can "opt out" of being given their test results or are offered the chance to undergo voluntary HIV testing in local counselling and testing services. This is aimed at minimizing survey participation bias. Those who opt out of being given their HIV test results and who do not seek their results miss the opportunity to receive life-saving antiretroviral therapy. The justification for HIV surveys without routine feedback of results to participants is based on a public health utility argument: that the benefits of more rigorous survey methods - reduced participation bias - outweigh the benefits to individuals of knowing their HIV status. However, people with HIV infection have a strong immediate interest in knowing their HIV status. In consideration of the ethical value of showing respect for people and thereby alleviating suffering, an argument based on public health utility is not an appropriate justification. In anonymous HIV surveys as well as other prevalence surveys of treatable conditions in any setting, participation should be on the basis of routine individual feedback of results as an integral part of fully informed participation. Ensuring that surveys are ethically sound may stimulate participation, increase a broader uptake of HIV testing and reduce stigmatization of people who are HIV-positive.

Les enquêtes de population sur la prévalence des maladies soulèvent des questions éthiques, notamment celle de savoir si les participants devraient être informés systématiquement des résultats de leurs tests. Les directives éthiques appellent à informer les participants de l'enquête de toute conclusion cliniquement pertinente pour permettre une gestion appropriée. Toutefois, dans les enquêtes anonymes de l'infection du virus de l'immunodéficience humaine (VIH), les participants ont la possibilité de « renoncer ¼ à être informés des résultats de leurs tests ou de se voir proposer de subir volontairement un test VIH dans les services de conseil et de dépistage locaux. L'idée est de réduire au minimum le biais de participation à l'enquête. Ceux qui choisissent de ne pas être informés des résultats de leur test VIH et qui ne demandent pas leurs résultats ratent l'occasion de recevoir une thérapie antirétrovirale pouvant leur sauver la vie.La justification d'enquêtes sur le VIH sans rétroaction systématique des résultats aux participants repose sur un argument d'utilité de santé publique : les avantages des méthodes d'enquête plus rigoureuses ­ biais de participation réduit ­ l'emportent sur les avantages pour les individus de connaître leur statut sérologique. Toutefois, les personnes infectées par le VIH ont un fort intérêt immédiat à connaître leur statut sérologique. Par rapport à l'importance éthique de montrer du respect pour les personnes et de soulager ainsi leurs souffrances, un argument qui se fonde sur l'utilité de la santé publique n'est pas une justification appropriée.Dans les enquêtes VIH anonymes ainsi que dans d'autres enquêtes sur la prévalence des maladies traitables dans n'importe quel milieu, la participation devrait être basée sur une rétroaction individuelle systématique des résultats en tant que partie intégrante d'une participation pleinement informée. Veiller à ce que les enquêtes soient conformes à l'éthique peut stimuler la participation, augmenter un recours plus large au dépistage du VIH et réduire la stigmatisation des personnes séropositives.

Las encuestas sobre la prevalencia de enfermedades basadas en la población plantean cuestiones éticas, como si se debería informar de forma rutinaria a los participantes acerca de los resultados. Las directrices éticas exigen que se informe a los participantes de cualquier hallazgo clínicamente relevante a fin de que sea gestionado de manera adecuada. Sin embargo, en las encuestas anónimas sobre el virus de la inmunodeficiencia humana (VIH) los participantes pudieron escoger no ser informados acerca de los resultados de sus pruebas o se les ofreció someterse voluntariamente a una prueba de VIH en los servicios locales de asesoramiento y análisis, opciones que tenían como objeto minimizar el sesgo en la participación en la encuesta. Aquellos que optan por no ser informados sobre los resultados de la prueba del VIH y los que no averiguan los resultados pierden la oportunidad de recibir una terapia antirretroviral que podría salvarles la vida.La justificación de la ausencia de información rutinaria sobre los resultados en las encuestas sobre el VIH se basa en un argumento de los servicios de sanidad pública, que afirma que los beneficios de los métodos de encuesta más rigurosos, con un sesgo de participación menor, superan los beneficios de que los participantes conozcan su estado serológico. Sin embargo, las personas infectadas por el VIH suelen demostrar un interés inmediato por conocer dicho estado. Teniendo en cuenta el valor ético de mostrar respeto por las personas y, en consecuencia, paliar su sufrimiento, no puede considerarse una justificación adecuada un argumento basado en los servicios de sanidad pública. En las encuestas anónimas sobre el VIH, así como en otras encuestas sobre la prevalencia de enfermedades tratables en cualquier emplazamiento, la participación debería tener lugar en base a una información personal rutinaria de los resultados como parte fundamental de una participación plenamente informada. Garantizar la ética de dichas encuestas podría fomentar la participación, aumentar la adopción de las pruebas del VIH y reducir la estigmatización de las personas seropositivas.

Potential motivations for and perceived risks in research participation: ethics in health research.

In a South African urban-township-based ethnographic study with adult 19 women and 7 men, we explored people's motivations for and experiences of research participation and perceptions of being asked about sensitive experiences, including gender-based violence. We also explored the implications of participation. Several informants were motivated by self-interest to participate in research, whereas others were more altruistic; yet with many there was a complex overlap. We found that altruism, as a motivation to participate in research, is a muddled and multifaceted issue that needs careful unpacking and nuanced discussion to understand. Breach of confidentiality was perceived as a main risk, and gender differences were apparent in reporting feared consequences, with women primarily fearing possible violent reprisals from partners. We conclude that the decision to participate in research seems to be a balanced and conditional process wherein individuals assess the potential benefits and risks to themselves and the potential contribution to others.

An ethical framework for automated, wearable cameras in health behavior research.

Technologic advances mean automated, wearable cameras are now feasible for investigating health behaviors in a public health context. This paper attempts to identify and discuss the ethical implications of such research, in relation to existing guidelines for ethical research in traditional visual methodologies. Research using automated, wearable cameras can be very intrusive, generating unprecedented levels of image data, some of it potentially unflattering or unwanted. Participants and third parties they encounter may feel uncomfortable or that their privacy has been affected negatively. This paper attempts to formalize the protection of all according to best ethical principles through the development of an ethical framework. Respect for autonomy, through appropriate approaches to informed consent and adequate privacy and confidentiality controls, allows for ethical research, which has the potential to confer substantial benefits on the field of health behavior research.

Method for identifying eligible individuals for a prevalence survey in the absence of a disease register or population register.

BACKGROUND: Identifying eligible individuals for a prevalence survey is difficult in the absence of a disease register or a national population register. AIM: To develop a method to identify and invite eligible individuals to participate in a national prevalence survey while maintaining confidentiality and complying with privacy legislation. METHODS: A unique identifier (based on date of birth, sex and initials) was developed so that database holders could identify eligible individuals, notify us and invite them on our behalf to participate in a national multiple sclerosis prevalence survey while maintaining confidentiality and complying with privacy legislation. RESULTS: Several organisations (including central government, health and non-governmental organisations) used the method described to assign unique identifiers to individuals listed on their databases and to forward invitations and consent forms to them. The use of a unique identifier allowed us to recognise and record all the sources of identification for each individual. This prevented double counting or approaching the same individual more than once and facilitated the use of capture-recapture methods to improve the prevalence estimate. Capture-recapture analysis estimated that the method identified over 96% of eligible individuals in this prevalence survey. CONCLUSIONS: This method was developed and used successfully in a national prevalence survey of multiple sclerosis in New Zealand. The method may be useful for prevalence surveys of other diseases in New Zealand and for prevalence surveys in other countries with similar privacy legislation and lack of disease registers and population registers.

[Evaluation in clinical practice of the quality of life of patients with VADS cancer: an ethical justification or a fad?]. / Evaluation en pratique clinique de la qualité de vie des patients atteints de cancers des V.A.D.S.: une démarche éthique justifiée ou un effet de mode?

Now that the treatment of head and neck cancer has been perfectly standardized and the complications and sequelae are well known, many authors have started to investigate health-related quality of life (QoL). The use of generic and cancer-specific QoL instruments remains limited to the field of research, but can this approach be transposed to clinical oncology? This study was designed to answer this question by identifying the ethical problems related to QoL assessment. The methodology used is based on a questionnaire survey of a cohort of 40 volunteer patients, conducted some time after their initial treatment in order to optimally assess their expectations and questions in relation to these aspects. The validity of the instrumental approach cannot be guaranteed due to conceptual limits, and the sociocultural level and cognitive state of the target population. A more subtle approach to QoL assessment in routine clinical practice would consist of a mixed approach harmoniously combining quantitative and qualitative aspects based on questionnaire and interview.

United States-Mexico Border Diabetes Prevalence Survey: lessons learned from implementation of the project.

This paper reviews and discusses the main procedures and policies that need to be followed when designing and implementing a binational survey such as the United States of America (U.S.)-Mexico Border Diabetes Prevalence Study that took place between 2001 and 2002. The main objective of the survey was to determine the prevalence of diabetes in the population 18 years of age or older along U.S.-Mexico border counties and municipalities. Several political, administrative, financial, legal, and cultural issues were identified as critical factors that need to be considered when developing and implementing similar binational projects. The lack of understanding of public health practices, implementation of existing policies, legislation, and management procedures in Mexico and the United States may delay or cancel binational research, affecting the working relation of both countries. Many challenges were identified: multiagency/multifunding, ethical/budget clearances, project management, administrative procedures, laboratory procedures, cultural issues, and project communications. Binational projects are complex; they require coordination between agencies and institutions at federal, state, and local levels and between countries and need a political, administrative, bureaucratic, cultural, and language balance. Binational agencies and staff should coordinate these projects for successful implementation.

[U.S.-Mexico cross-border cooperation in research on diabetes mellitus type 2]. / Cooperación transfronteriza en investigación sobre diabetes mellitus tipo 2: México-Estados Unidos.

OBJECTIVE: To describe and analyze, utilizing a case study approach, the U.S.- Mexico Border Diabetes Prevention and Control Project, a health research cooperation initiative incorporating the participation of federal, state, and local institutions of both countries. METHODS: A model of equal representation, participation, consensus, and shared leadership was used, with the participation of more than 130 institutions. A sample of 4 020 people over 18 years of age was obtained by a random, multistage, stratified, clustered design. A questionnaire about diabetes mellitus type 2 (DM2) and health was applied. The statistical analysis took into account the design effect. RESULTS: The prevalence of diagnosed DM2 was 14.9% (95% confidence interval [95% CI]: 12.5-17.6) and the prevalence of diagnosed DM2 adjusted by age was 19.5% (95% CI: 16.8-22.6) on the Mexican side of the border and 16.1% (IC95%: 13.5-19.2) on the U.S. border side. There were differences between the DM2 prevalence and risk factors along the border. CONCLUSIONS: The U.S.-Mexico Border Diabetes Prevention and Control Project allowed the border zone between the two countries to be considered, for the first time ever, as a unit for epidemiological research. A shared understanding among all participating institutions and entities of sociopolitical structures and procedures is required for effective border health cooperation initiatives.