Bakgrund Diabetes typ 2 är en av de snabbast växande sjukdomarna i både Sverige och resten av världen. Vid diabetes typ 2 utgör egenvård en betydande del av behandlingen och för att klara detta behövs kunskap om sjukdomen. I sjuksköterskeyrket ingår att förse patienter med information och kunskap, bland annat genom patientundervisning. Ett flertal studier beskriver hur information och kunskap uppfattas av patienter och hur det på bästa sätt förmedlas till dem. Däremot saknas ett instrument som mäter patienternas befintliga kunskap om sjukdomen och hur de värderar information. Syfte Syftet med arbetet är att undersöka hur informations- och kunskapsbehovet vid diabetes typ 2 varierar utifrån kön, HbA1c, ålder, utbildning och duration samt identifiera de frågor där informations- och kunskapsbehovet är störst respektive lägst. Metod Arbetet grundas på en kvantitativ enkät utformad efter The Toronto Informational Needs Questionnaire-Breast Cancer och är analyserat utifrån data från 86 patienter.  Frågor ur denna enkät har behandlats i dataprogrammet Statistical Package for the Social Sciences och presenteras som deskriptiv statistik. Den teoretiska utgångspunkten för arbetet är Lazarus och Folkmans teori. Resultat Det finns ett behov av såväl mer information som kunskap hos alla de grupper som undersökts. Skillnader dem emellan kunde urskiljas. De grupper som rankat informations- och kunskapsbehovet högst är kvinnor och personer som haft diabetes typ 2 i mer än 11 år. Män rankar vikten av information lägre och anser sig i större utsträckning ha den kunskap de behöver. Frågor där information av patienterna anses vara mycket viktigt rör medicinska frågor. Kunskap kring hur sociala frågor ska hanteras värderades lägst. Diskussion Informationssökning är ett sätt att hantera den situation som uppstår när en människa drabbas av sjukdom. Hur varierar behovet mellan olika demografiska variabler som kön, ålder, utbildning, HbA1c, och duration? Hur värderar patienterna sin kunskap? Inom vilka områden finns informationsbehov och kunskapsluckor? / Background Type 2 diabetes is one of the fastest growing diseases in Sweden and the rest of the world. In type 2 diabetes self-care is an important part of the treatment and knowledge is needed to manage that. The nursing profession comprises to provide patients with information and knowledge - this is done through patient education. Several studies describe how information and knowledge is perceived by patients and the most suitable methods to pass information and knowledge on. However there is a lack of tools that measures patients existing knowledge and how they value information. Aim The aim of this study is to investigate how need for information and knowledge in diabetes type 2 varies by gender, HbA1c, age, education and duration, and to identify questions where the need for information and knowledge is the highest and the lowest. Methods The study is based on a quantitative survey designed by The Toronto Informational Needs Questionnaire - Breast Cancer and is analyzed using the data from 86 patients. Questions from this survey have been processed in a software called Statistical Package for the Social Sciences and the result is presented as descriptive statistics. The theoretical starting point for the study is the Lazarus and Folkman`s theory. Results There is a need for more information as well as knowledge in all of the groups studied. Differences between the groups were discerned and the groups that ranked the needs for information and knowledge highest were women and people who have had diabetes type2 for more than 11 years. Men rank the importance of information lower and they consider themselves to a greater extent having the necessary information. Questions where information is considered very important concern medical issues. Knowledge of how social issues would be handled; were ranked as the lowest. Discussions Searching for information is one way to handle the situation that arises when one gets ill. How requirements vary among different demographic groups, such as gender, age education, HbA1c and duration? How do patients evaluate their knowledge, and in which areas do gaps in information and knowledge exist?

La loi du 04 mars 2002 relative aux droits des malades et à la qualité et à la qualité du système de santé et la loi HPST (Hôpital, Patients, Santé et Territoires) de 2009 qui accorde un cadre légal à l’éducation thérapeutique ont promu l’autonomie du patient en favorisant sa participation aux décisions médicales. L’autogestion de la maladie chronique voulue par les pouvoirs publics en fournissant ces outils juridiques pour améliorer la qualité de soins, a suscité notre intérêt pour programme d’éducation thérapeutique destiné à des patients insuffisants rénaux en pré-dialyse. L’un des objectifs est de favoriser la liberté des patients à choisir une méthode de dialyse. Dans notre travail de thèse, nous avons voulu montrer comment les déterminants sociaux des décisions médicales et ceux liés aux choix d’une méthode de dialyse sont construits. Si en France, les patients semblent davantage se tourner vers une prise en charge à l’hôpital, dans certains pays, c’est le pluralisme médical qui est de mise. L’exercice de l’auto-analyse a montré le poids de l’économique, de la culture, de la famille dans les choix de santé.Par ailleurs, la place de l’éducation thérapeutique dans le processus décisionnel n’est pas figée : l’éducation thérapeutique peut être complémentaire à la pratique médicale, être un outil d’aide à la décision pour certains patients insuffisants rénaux ou être utilisée par les médecins pour favoriser l’observance décisionnelle des patients. Nous avons montré que les patients et les médecins se basent sur plusieurs facteurs qui peuvent influencer la nature de la délibération.Cette étude a montré que le choix est réseauté et que les décisions sont construites car elles sont basées sur des interactions et des stratégies médicales. Ces déterminants permettent également de comprendre comment la confiance est construite dans le processus décisionnel. Tantôt distribuée, tantôt déplacée, la confiance est explicative du type d’information que le patient priorise. Le choix réseauté du patient amène finalement à la relativisation du modèle de décision médicale partagée qui semble de plus en plus avoir un caractère normatif dans la relation entre professionnels de santé et patients. / The law of March 04th, 2002 on the rights of patients and the quality of the health system and the law HPST (Hôpital, Patients, Santé et Territoires) of 2009 that grants legal framework for patients’ education, have promoted the patient’s autonomy by encouraging his participation in medical decisions. Self-management of chronic illness as favoured by public authorities in providing the legal tools to improve the quality of care has aroused our interest in patient education programs for patients with renal failure in pre-dialysis. One of the objectives of this program is to allow patients free choice when deciding on the method of dialysis.Our thesis aims to underline how the social determinants at work in medical decisions and those involved in the choice of a dialysis method are constructed.In France, patients seem to favor hospital patient care, but in some countries, medical pluralism is more frequent. The exercise of self-analysis has revealed the significant part played by economy, culture and family in health choices.Moreover, the part played by patient education in the decision-making process is neither fixed nor pre-determined: patient education can complement medical practice, can be a decision support tool for some kidney patients or be used by doctors to promote patient decision-making compliance.We have shown that patients and physicians rely on several factors that may influence the nature of the discussion.This study reveals that the choice is networked and that the decisions that are made are the outcome of several interactions and medical strategies. These determinants also help to understand how trust develops and leads to decision-making.Sometimes distributed, sometimes shifted, trust accounts for the type of information prioritized by the patient. The networked choice of the patient finally puts the shared decision-making model into perspective as it increasingly seems to have a normative character in the relationship between health professionals and patients.

Made available in DSpace on 2015-07-22T20:49:29Z (GMT). No. of bitstreams: 0 Previous issue date: 2009-12-31 / Introdução: A educação de pacientes portadores de doença pulmonar obstrutiva crônica (DPOC) é parte fundamental nos programas de reabilitação pulmonar e objetiva um melhor manejo com a doença. Objetivo: Avaliar a aprendizagem de pacientes com DPOC submetidos a um programa educativo. Método: Foi realizado um estudo prospectivo com portadores de DPOC acompanhados ambulatorialmente submetidos a um programa educativo padronizado. Para avaliar a intervenção foram utilizados questionários de avaliação do conhecimento. De qualidade de vida (AQ20 e SF36), nível de ansiedade e depressão (IDATE e Beck). Um valor de p < 0,05 foi considerado significante. Resultados: Observamos após o programa educativo, aumento no número de acertos do questionário de conhecimento sobre a doença variando de 59,58% para 91,25% (p < 0,001), melhor performance nas técnicas corretas de conservação de energia; maior número de acertos na utilização da medicação inalatória, variando de 6,5 + 1,6 para 10,25 + 1,52 (p = 0,002) com relação à utilização do nebulímetro pressurizado sem espaçador, de 6,7 + 0,9 para 9,3 + 0,6 (p<0,001) para a utilização do nebulímetro pressurizado com espaçador, a utilização do inalador de pó seco, de 8,9 + 0,4 para 9,8 + 0,2 (p<0,001). Não encontramos alteração na qualidade de vida relacionada à saúde e nem nos níveis de ansiedade e depressão. Conclusão: Um programa educativo estruturado atua como adjuvante eficaz no plano de tratamento dos pacientes com DPOC, dotando-os de importantes conhecimentos a respeito de sua doença e podendo mudar hábitos inadequados de saúde. / Introduction: The education of chronic obstructive pulmonary disease – COPD patients is a fundamental part of pulmonary rehabilitation programs and it aims a better disease management. Objectives: To assess the learning capacity of COPD patients undergoing an educational program. Methods: A prospective study was performed with COPD patients at the Pulmonary Rehabilitation Center of the Universidade Federal de São Paulo/Lar Escola São Francisco, Brazil submitted to a educational program. Results: There was an increase in the number of correct questions to the questionnaire related to knowledge of the disease (59,58% to 91,25%; p < 0,001); a better performance in two activities of daily life (13,6% to 63,6%; p < 0,001 and 9,1% to 36,4%; p < 0,01). We observed a greater number of correct responses after the educational program; the mean went up from 6.5 ± 1.0 to 10.25 ± 0.96 (p = 0.002) when a pressurized nebulizer without a spacer was used, and from 6.7 ± 1.3 to 9.3 ± 0.9 (p < 0.001) when a nebulizer with a spacer was employed; the mean number of correct responses when using a dry powder inhaler increased from 8.9 ± 0.8 to 9.8 ± 0.2 (p < 0.001). We found no alterations in health quality or anxiety and depression levels. Conclusion: We concluded that a structured educational program acts as an important aid in treating COPD patients, providing them with essential knowledge about their disease and possibly leading to a change of improper health habits. / TEDE / BV UNIFESP: Teses e dissertações

Comunicar aos pacientes os riscos de reações adversas dos medicamentos é fundamental para a tomada de decisão adequada dos pacientes, pois a informação aprimora seu conhecimento e influencia suas atitudes, auxiliando os pacientes a melhorar sua saúde. Estudos têm demonstrado que existem grandes diferenças individuais na interpretação de termos que são comumente usados para expressar risco de experimentar uma reação adversa e que a compreensão é influenciada pela apresentação da informação, bem como por fatores relacionados ao indivíduo, como o letramento em saúde e a habilidade numérica. O objetivo geral deste estudo foi avaliar o efeito de diferentes formatos de informações escritas na compreensão de reações adversas de medicamentos pelo usuário. Primeiramente foi realizada uma revisão sistemática a fim de avaliar as evidências do efeito de diferentes formas de informar sobre reações adversas na compreensão dessas informações pelo usuário de medicamentos. Em uma segunda etapa, foi realizado ensaio clínico randomizado duplo- cego (n=393), para avaliar a eficácia de três formatos, baseados nos resultados preliminares da revisão sistemática. Para a realização da revisão sistemática foram utilizadas as bases PubMed, Cochrane, EMBASE, SCIELO, LILACS, CINAHL, IPA, Web of Science, SCOPUS, OneFile, EBSCO e Clinical Trials, Proquest e Open Grey. O período de cobertura foi do início da base de dados até setembro de 2015. Foram incluídos na revisão estudos que comparassem a compreensão de dois ou mais formatos de informações escritas sobre a frequência de reações adversas, fornecidos a dois ou mais grupos de pacientes, com qualquer delineamento. Ao total, 23 ensaios clínicos realizados nos Estados Unidos e Reino Unido foram incluídos, envolvendo 14.342 participantes. Entre os estudos incluídos, 14 compararam formatos numéricos e nominais em diferentes combinações, 5 compararam formatos gráficos e os demais apresentaram outros formatos, como risco complementar versus risco total, diferentes formatos no denominador (100 x 1000), risco absoluto, risco relativo e NNH (número necessário para causar dano). A grande heterogeneidade entre os estudos não tornou possível a metanálise dos dados. Formatos numéricos demonstraram superioridade aos não-numéricos (nominal) na compreensão das informações. O uso de formatos gráficos comparados a textos também melhoraram a compreensão. A partir dos estudos avaliados nessa revisão, ainda não é possível definir qual o melhor formato para comunicar sobre reações adversas a medicamentos. Por exemplo, não há estudos comparando os formatos verbal, numérico, combinado e gráfico, o que favoreceria uma avaliação sobre o formato mais adequado à compreensão dos usuários de medicamentos. Na segunda etapa, foi realizado um ensaio clínico randomizado duplo-cego, em paralelo, unicêntrico. Usuários adultos de uma farmácia escola, com capacidade leitora avaliada pelo instrumento de Avaliação Breve de Alfabetismo em Saúde em Português para adultos (SAHLPA), foram randomizados para um dos três grupos: nominal + faixa de porcentagem, faixa de porcentagem e porcentagem absoluta. O desfecho principal foi a compreensão, avaliada como essencial (impressão geral da informação), literal (numérica especificamente), e classificada em adequada e inadequada. A percepção dos usuários quanto à satisfação da informação, intenção de tomar o medicamento, facilidade de entendimento e clareza das informações recebidas foram avaliadas como desfechos secundários. Foi utilizado teste de análise da variância (ANOVA) e qui-quadrado de Person para a comparação das diferenças. Os participantes foram recrutados no período entre junho a outubro de 2015 e foram entrevistados durante 35 minutos, em média; no total 393 participantes foram randomizadas para um dos três grupos. A compreensão essencial adequada foi de 65,6% para o formato nominal + faixa de porcentagem (n=128), 63,4% para faixa de porcentagem (n=131), 62,3% para porcentagem absoluta (n=131), sem diferença estatisticamente significativa entre os formatos (p >0,05). A compreensão literal adequada foi de 53,9% para o formato nominal + faixa de porcentagem, 44,3% para faixa de porcentagem e 48,5% para porcentagem absoluta, também sem diferença estatisticamente significativa entre os formatos (p >0,05). Os participantes que receberam o formato de porcentagem absoluta consideraram a informação mais clara (p<0,05), em comparação ao outros grupos. Não houve diferença estatisticamente significativa entre os três formatos quanto aos desfechos secundários. Os resultados não demonstram diferenças na compreensão das informações entre os três formatos avaliados, portanto, os três formatos avaliados são equivalentes para informar a frequência das reações adversas. No entanto, a baixa compreensão apontada pelos resultados, demonstra que formatos alternativos precisam ser avaliados. Levando em consideração que os formatos numéricos demonstram-se mais eficazes em relação aos não-numéricos, e que os formatos gráficos podem auxiliar na compreensão de informações sobre reações adversas, um formato alternativo para informar as reações adversas relacionadas aos medicamentos precisa ser desenvolvido, a partir das necessidades dos usuários. É preciso considerar as preferências, nível de letramento em saúde e habilidades numéricas dos usuários de medicamentos. A disponibilização das bulas não deve ser apenas para cumprir as prerrogativas legais, mas sim deve cumprir seu papel de informar os usuários, de maneira eficiente, com conteúdo e formato adequados e compreensíveis. Por isso, é imprenscindível que as informações e seus formatos sejam avaliados pelos usuários de medicamentos, antes de serem empregados em materiais informativos, como a bula de medicamentos. / Communicate to patients the risks of side effects of drugs is critical for making appropriate decision by patients because the information enhances their knowledge and influence their attitudes, helping patients improve their health. Studies have shown that there are large individual differences in the interpretation of terms that are commonly used to express risk of experiencing a side effects and that understanding is influenced by the presentation of information, as well as factors related to the individual, such as literacy in health and numeracy. This study aim was to evaluate the effect of different formats of written information in the understanding of side effects by medicines user. First, was conducted a systematic review to assess the evidence of the effect of different ways to report side effects understanding of this information by the medicines user. In a second moment, clinical trial was conducted double-blind randomized (n = 393) to evaluate the efficacy of three formats, based on preliminary results of a systematic review. For the systematic review were used the MEDLINE (PubMed), Cochrane, EMBASE, SCIELO, LILACS, CINAHL, IPA, Web of Science, Scopus, OneFile, EBSCO and Clinical Trials, and Proquest Open Grey. The coverage period was the beginning of the database until September 2015. Were included in the review studies comparing the understanding of two or more written information formats on the frequency of adverse reactions, provided two or more groups of patients, any design. A total of 23 clinical trials in the United States and the United Kingdom were included, involving 14,342 participants. Among the included studies, 14 compared numerical and verbal formats in different combinations, 5 compared graphic formats and others showed other formats such as additional risk versus overall risk, different formats in the denominator (100 x 1000), absolute risk, relative risk and NNH (number needed to harm), positive versus negative frames. The heterogeneity between the studies did not make possible the meta-analysis of the data. Numerical forms demonstrated superiority to non-numeric in understanding the information. The use of graphics formats compared to texts also improved understanding. From the studies evaluated in this review, it is not possible to determine the best format for reporting on side effects. For example, there are no studies comparing the verbal descriptors, numeric, graphic and combined, which would favor an evaluation of the most appropriate format for the understanding of medicines users. In the second stage, was conducted a clinical trial randomized double-blind, parallel, single-center. Adult users of a pharmacy school, with reading capacity assessed by the Brief Assessment Instrument Literacy Health in Portuguese for adults (SAHLPA), were randomized to one of three groups: verbal + range of percentage, percentage range and absolute percentage. Main outcome variables were verbatim (specific numerical) and gist knowledge, classified as adequate and inadequate. The perception of users and the satisfaction of information, intended to take the drug, ease of understanding and clarity of information received were assessed as secondary endpoints. Was used analysis of variance test (ANOVA) and chi-square Person to compare the differences. Participants were recruited between June and October 2015 and were interviewed for 35 minutes on average; in total 393 participants were randomized to one of three groups. The adequate levels of gist knowledge was 65.6% and 53.9% for nominal format + percentage range (n = 128), 63.4% and 44.3% for percentage range (n = 131), 62 3% and 48.5% for absolute percentage (n = 131), with no statistically significant difference between the groups (p> 0.05). The adequate levels of verbatim knowledge was 53.9% for the nominal format + percentage range, 44.3% for percentage range and 48.5% for absolute percentage, also with no statistically significant difference between the groups (p> 0.05 ). Participants who received absolute percentage format considered the clearest information (p <0.05) compared to the other groups. There was no statistically significant difference between the three formats as the secondary outcomes. The results do not show differences in the understanding of information among the three formats, so the three evaluated formats are equivalent to inform the frequency of adverse reactions. However, poor understanding of the results indicated shows that alternative formats must to be evaluated. Taking into account that numerical formats are more effective than numerical ones, and that graphical formats can assist in understanding information on adverse reactions, an alternative format for reporting adverse drug-related reactions needs to be developed from needs of medicine users. It is necessary to consider the preferences, level of literacy in health and numerical abilities of the users of medicines.

Introdução: Atualmente no sistema de saúde brasileiro, como integrante da atenção primária, existem as Unidades Básicas de Saúde com duas formas distintas de atuação. Uma das formas, aqui denominada como modelo “tradicional”, refere-se aos atendimentos previamente agendados, onde os profissionais atendem à demanda espontânea, puramente assistencial e curativa. Outra forma de atuação, presente nas Unidades pesquisadas é a Estratégia de Saúde da Família, constituída por uma equipe multiprofissional que atua em território de abrangência determinados, a estes territórios pertencem todos os usuários que ali residem, bem como tudo que ali acontece. Esses são os ambientes para a ação desta equipe, espaços de aprendizagem em saúde onde a troca e a construção do conhecimento devem permear, buscando mudanças de hábitos/atitudes, onde cada usuário possa construir ‘novos olhares’ frente aos cuidados consigo mesmo e com os outros. Na luz desta ideia, dentro das propostas de intervenção das equipes de estratégia de saúde da família e também do modelo tradicional de atuação, existe a grande dificuldade observada e também verbalizada pelos profissionais no que se refere ao trabalho com educação em saúde. Existe uma fala constante de que é muito difícil realizar este tipo de proposta e que os usuários têm dificuldades de aderir ao que é apresentado. Objetivo: O objetivo desta pesquisa, é poder conhecer o quanto essas questões de educação em saúde permeiam o trabalho das equipes de saúde do município de Canoas/RS, o quanto elas se mobilizam por este tipo de intervenção, qual o conhecimento sobre o assunto verificando a presença nos cursos de graduação, o que fazem para conseguir mudar realidades e assim promover saúde atuando em equipes, em ambientes diversificados e não apenas no consultório. Método: Este trabalho utilizou como metodologia a aplicação de um instrumento de coleta de dados para todos os profissionais de nível superior de todas as Unidades Básicas de Saúde do município. A análise de dados caracterizou-se por ser quantitativa e permitiu o conhecimento da realidade, da dimensão de como os profissionais atuam com educação em saúde nos mais diferentes aspectos. Como resultado percebeu-se um bom conhecimento sobre o tema, o que possibilita a elaboração de programas a serem construídos junto com todos os envolvidos para que possam aprimorar e tornar mais efetivas essas práticas. Fica a ideia de continuidade desta pesquisa, estruturando estes programas e avaliando sua efetividade e eficácia. Resultados: Dos 191 questionários distribuídos 103 retornaram preenchidos. / Introduction: Nowadays, in the Brazilian healthcare system, as a member of primary attention, there are Basic Units of Health, with two distinct approaches. One of them, called as “traditional model”, refers to previously scheduled meetings, which professionals works in this spontaneous demand, purely for helping and cure. Another method of work, existed into researched Units, is the Family Health Strategy, composed by a multidisciplinary team, acting in a limited territory, regards with all the people that living there, as well as all the things that happens in such territory. These are the environments of action from these teams, health learning spaces where the interchange and the construction of knowledge must resides, in the search of habit changes, where each user can construct “new sights” about yourself care, as well as with others. With this idea in mind, considering the intervention purposes from Family Health Strategy teams, as well as from the traditional model, there is a difficulty observed and registered from health professionals, about health education work. There is a consensus about the difficulty related to this kind of proposed work, and the users from them hardly adhere to the proposed topics. Goal: The goal of this research is the knowledge about such questions from health education into the work of health teams in Canoas city, as well as the mobilization of the people about such kind of intervention, the knowledge about the subject into the university courses, the actions taken to the change of reality and, then, promote health through the acting of teams, considering the diversity of environments, not only in health centers. Methodology: This research uses as a methodology a data search instrument for all graduate level professionals, from all the Health Basic Units of such city. The data analysis is characterized in a quantitatively manner, permitting the knowledge of the current reality, as well as the dimension of how such professionals act with health education in several scenarios. As a result, it is perceived a good knowledge about the subject, which makes possible the construction of programs, together with all the people involved, turning possible the improvement of such practices. Finally, the idea of continuity of this research is registered, through the structure of such programs and evaluation of its effectivity and efficiency. Results: From 191 surveys sent to the public involved, there were 103 surveys answered.

The number of patients with kidney disease is increasing worldwide. Such diseases include chronic kidney failure that needs dialysis treatment. Problems associated with providing nursing care to patients in a dialysis program are extensive and specific. Starting the treatment with a peritoneal dialysis or a haemodialysis causes a great psychological burden to patients. It noticeably affects not only patients' lives but also lives of their family and friends. Patients in the regular dialysis program are facing many health and social problems. Mutual trust between a nurse and a patient on dialysis to a certain extent influences the course of the treatment. Balanced and satisfied patient can live a better and more valuable life. The goals of the thesis: 1) To determine whether a comparably high quality nursing care is provided to patients with haemodialysis and peritoneal dialysis 2) To determine whether the approach to the provision of nursing care to the patients with haemodialysis and peritoneal dialysis is comparable. 3) To determine whether comparable forms of education and communication are used in providing nursing care for the patients with haemodialysis and peritoneal dialysis. Research questions: 1) Is the nursing care provided to the patients with haemodialysis and peritoneal dialysis of comparable quality? 2) A the approach to the provision of nursing care for patients with haemodialysis and peritoneal dialysis comparable? 3) Are comparable forms of education and communication used in providing nursing care for the patients with haemodialysis and peritoneal dialysis? Methods used: In the empirical part of the thesis a qualitative research was used to process data. The research was conducted through a non-standardized interview. Three sets of questions were created for the three groups of respondents, i.e. the respondents with peritoneal dialysis, respondents with haemodialysis and nurses who take care of patients with haemodialysis and peritoneal dialysis. The criterion for the selection of respondents was their willingness to cooperate. The nature and purpose of the research was explained to the addressed respondents. From the interviews with patients it was determined how they perceive the provided nursing care, the nurses' approach, and the way of interaction during haemodialysis and peritoneal dialysis. Interviews with nurses were focused on comparability and demands of nursing care for patients with haemodialysis and peritoneal dialysis, as well as on the used forms of communication and the way how to approach these patients. Results: The results of the research show that the care provided to patients with peritoneal dialysis as well as with haemodialysis is perceived by the responding patients with peritoneal dialysis, with haemodialysis and nurses as of the same quality. Peritoneal dialysis and haemodialysis each have their specificities and a different way of execution. Both are provided in differing environments. Peritoneal dialysis is done by the patient himself in their own social environment. During haemodialysis, nursing care is provided to the patient by nurses in a haemodialysis centre. As comparable is perceived by all respondents the nurses' approach to the patients, i.e. to each patient individually. In conclusion, the results imply that nurses during the contact with the patients with peritoneal dialysis and with haemodialysis use comparable forms of communication and education. Conclusion: At the present time there is an attempt to perform dialysis treatment to benefit the patient as much as possible. Peritoneal dialysis and haemodialysis are considered as equivalent substitute for renal function. They differ only in the principle and the method of executing. Nursing care provided to patients with peritoneal dialysis and with haemodialysis is perceived by the respondents as of comparable quality. The results of this thesis can be the basis for further research.

La Société Européenne de Cardiologie recommande pour les patients insuffisants cardiaques, en plus de la prise en charge médicamenteuse et interventionnelle, une prise en charge de type « éducation du patient » pour améliorer leur qualité de vie. En France, des programmes multidisciplinaires d’éducation du patient en hôpital ont mesuré leurs effets sur les ré-hospitalisations, la mortalité et le taux de participation des patients aux programmes. Certaines études internationales ont mesuré l’effet de programmes éducatifs délivrés par des équipes hospitalières multidisciplinaires, d’autres ont recruté des patients en soins primaires, mais les programmes étaient conduits par des infirmières ou des assistants des médecins généralistes. Ce type de programme ne reflète pas la situation actuelle en France où la plupart des patients sont suivis en ambulatoires par leurs médecins généralistes. Il semblait nécessaire de connaître plus précisément l'effet de programmes d'éducation du patient délivrés par les médecins généralistes auprès de leurs propres patients. L’objectif principal de l’étude ETIC (Education thérapeutique des patients insuffisants cardiaques) était d’évaluer si un programme d’éducation des patients insuffisants cardiaques délivré par leurs médecins traitants et suivis en médecine générale, améliorait leur qualité de vie. Cette étude interventionnelle, contrôlée, randomisée en grappes, a inclus 241 patients insuffisants cardiaques chroniques suivis par 54 médecins généralistes pendant 19 mois. Les médecins généralistes du groupe intervention ont été sensibilisés pendant 2 jours au programme d’éducation du patient et entrainés à adapter leurs propres objectifs d'éducation aux attentes du patient. Plusieurs séances d'éducation ont été simulées au cours de la formation des médecins. La 1re séance comportait un bilan éducatif explorant le mode de vie et les habitudes alimentaires, l'activité physique, les activités de loisirs, les projets et les ressources des patients. Les patients bénéficiaient de 4 séances d’éducation tous les 3 mois pendant 12 mois puis d’une séance d’éducation de synthèse au 19e mois de suivi. Le critère d’évaluation principal était la qualité de vie mesurée par une échelle de qualité de vie générique, la MOS 36-Item Short Form Health Survey (SF-36), et par une échelle de qualité de vie spécifique de l’insuffisance cardiaque, le Minnesota Living with Heart Failure Questionnaire (MLHFQ). La moyenne d’âge des patients était 74 ans (± 10.5), 62% était des hommes, et leur fraction d’éjection ventriculaire gauche moyenne était de 49.3% ± 14.3%. A la fin du suivi, le score MLHFQ moyen dans les groupes intervention et témoin étaient respectivement 33.4 ± 22.1 versus 27.2 ± 23.3; p = 0.74, intra-cluster coefficient [ICC] = 0.11. A la fin du suivi, la moyenne des scores SF-36 mental et physique dans les groupes intervention et témoin étaient respectivement 58 ± 22.1 versus 58.7 ± 23.9 (p = 0.58, ICC = 0.01) et 52.8 ± 23.8 versus 51.6 ± 25.5 (p = 0.57, ICC = 0.01). Le nombre de patients insuffisants cardiaques à fraction d’éjection conservée (ICFEp) était de 93 (80.9%) dans le groupe intervention et de 94 (74.6%) dans le groupe témoin (p = 0.24). Une étude exploratoire a été réalisée pour décrire les traitements prescrits dans la population de cette étude : évaluation de l’adhésion des médecins généralistes aux recommandations pour les patients à fraction d’éjection réduite (ICFEr) et description des traitements prescrits aux patients ICFEp. Le programme d’éducation du patient délivré dans le cadre de l’étude ETIC, n’a pas fait la preuve d’une amélioration de la qualité de vie des patients. D’autres recherches sont nécessaires pour améliorer la qualité de vie de ces patients. Les stratégies et les méthodes d’éducation restent un champ de recherche à développer. / The European Society of Cardiology guidelines recommend non-pharmacological management to improve patients’ quality of life. In France, patient education programs delivered by hospital multidisciplinary teams in outpatient clinics have been assessed for their impact in patients with heart failure (HF). Some international studies assessed patient education interventions for heart failure patients recruited in the hospital. These programs were delivered by hospital multidisciplinary teams. Others have recruited patients with heart failure in primary care but the patient education programs were delivered by nurses or general practitioner assistants. This does not reflect the situation of the majority of patients in France, most of whom are ambulatory and cared for by general practitioners (GPs). Therefore, more evidence is needed on the effect of patient education programs delivered by GPs. As GPs are the doctors closest to patients, we hypothesized that their patient education could improved the HF patients quality of life. The ETIC (Education thérapeutique des patients insuffisants cardiaques) trial aimed to determine whether a pragmatic education intervention in general practice could improve the quality of life of patients with chronic heart failure (CHF) compared with routine care. This cluster randomised controlled clinical trial included 241 patients with CHF attending 54 general practitioners (GPs) in France and involved 19 months of follow-up. The GPs in the intervention group were trained during an interactive 2-day workshop to provide a patient education program. Several patient education sessions were simulated during the 2-day workshop. Patients had a further four education sessions, at 4, 7, 10 and 13 months, followed by an overview session at 19 months. The primary outcome was patients’ quality of life, as measured by the MOS 36-Item Short Form Health Survey (SF-36), a generic instrument, and the Minnesota Living with Heart Failure Questionnaire (MLHFQ). The mean age of the patients was 74 years (± 10.5), 62% were men and their mean left-ventricular ejection fraction was 49.3% (± 14.3). At the end of the follow-up period, the mean MLHFQ scores in the Intervention and Control Groups were 33.4 ± 22.1 versus 27.2 ± 23.3 (p = 0.74, intra-cluster coefficient [ICC] = 0.11). At the end of the follow-up period, SF-36 mental and physical scores in the Intervention and Control Groups were 58 ± 22.1 versus 58.7 ± 23.9 (p = 0.58, ICC = 0.01) and 52.8 ± 23.8 versus 51.6 ± 25.5 (p = 0.57, ICC = 0.01), respectively. Patients with heart failure with preserved ejection fraction (HFpEF) in the intervention group and in the control group were respectively: 93 (80.9%) and 94 (74.6%) (p = 0.24). A comprehensive data set of this trial was used to assess the prescription behaviour of GPs: GP’s guideline adherence for pharmacotherapy of heart failure with reduced ejection fraction (HFrEF) patients and to describe pharmacotherapy of HFpEF patients. Conclusions Patient education delivered by GPs to elderly patients with stable heart failure in the ETIC program did not demonstrate an improvement in their quality of life compared with routine care. Further research on improving the quality of life of elderly patients with CHF in primary care is needed. Patient education strategies and methods, as well as relevant tools and adapted criteria used to assess them, remain a field of research to develop. This area of investigation will be the following of this work.

Le discours commun plaide en faveur l'autonomie du malade. Pourtant soigner la maladie chronique révèle aussi des attachements. C'est ce que nous proposons de mettre en évidence, à travers notre thèse qui prend pour exemple le diabète et envisage, à travers le développement de la notion de travail d'équipement, de questionner l'autonomie, qui est loin d'aller de soi. A partir d'entretiens, d'observations de terrain et d'objets, de recherche de traces, nous interrogeons des pratiques telles que l'éducation thérapeutique, l'introduction des médicaments, des équipements (lecteur de glycémie, pompe à insuline). Tous ces éléments sont autant de médiations, pour le malade, son entourage, les professionnels de santé, les associations de malades, qui influencent le cours de la vie avec la maladie. Le travail d'équipement permet de faire le lien entre la sociologie de la santé et de la maladie, l'interactionnisme, la phénoménologie et la sociologie de l'acteur réseau. Il offre une grille de lecture de la maladie chronique et du soin, au regard de tous les équipements qui contribuent à la prise en charge la maladie. Il permet de définir ce qu'est l'autonomie dans le cadre d'une maladie qui tient le malade et va plus loin ouvrant vers la construction identitaire de l'homme-avec-la-maladie. / Common speech calls for patient autonomy. Yet chronic illness care also reveals attachments. This is what we propose to highlight, through our thesis that takes for example diabetes and plans through the development of the concept of ‘the equipping work', questioning the autonomy, which is far to go self. From interviews, field observations, objects screening, and search of traces, we interrogate such practices as therapeutic education, the introduction of drugs and equipment (glucometer, insulin pump). These elements are all mediations, for the patient, family members, health professionals, patient organisations, which influence the course of living with the disease. Equipping can make the link between the sociology of health and illness, symbolic interactionism, phenomenology and the actor network theory. It provides a grid of chronic illness and care, with all the equipements that contribute to the management of disease. It allows defining autonomy despite the strength of disease ties and leads to rebuild the identity of the man-with-the-sickness.

Obiettivo: Accrescere la conoscenza relativa a come supportare il coinvolgimento attivo dei pazienti anziani, descrivendo i contenuti di interventi per il coinvolgimento attivo con pazienti anziani attualmente presenti sul panorama scientifico, sviluppando un nuovo intervento e studiando le prime fasi della sua implementazione. Metodo: Nel primo studio, in risposta al primo obiettivo, è stata condotta una analisi sistematica della letteratura scientifica sul tema. Il secondo studio ha visto la conduzione di focus groups con professionisti sanitari e interviste individuali a pazienti anziani per raffinare e validare qualitativamente un nuovo intervento per il coinvolgimento attivo. Nel terzo studio, si è studiata l’implementazione iniziale dell’intervento in un contesto italiano di cure integrate attraverso una ricerca partecipativa. Risultati: Il principale risultato del primo studio è stato la sbilanciata attenzione tra i 35 interventi per il coinvolgimento attivo presenti in letteratura per le componenti emotive a favore di quelle educative e comportamentali. È sulla base dei risultati del primo studio e di un modello teorico che è stata sviluppata una prima bozza di intervento. Nel secondo studio, la prospettiva di professionisti sanitari e pazienti anziani ha fornito indicazioni per modificare l’intervento e renderlo potenzialmente implementabile nella pratica clinica. L’intervento che è risultato consiste di almeno due incontri mensili individuali, più un set personalizzato di esercizi riflessivi per il paziente da compilare in autonomia a casa. Infine, il terzo studio ha osservato come le diverse pratiche educative presenti nei diversi setting – ospedaliero, ambulatoriale, territoriale - di un contesto di cura integrato hanno generato diverse, specifiche, difficoltà per l’implementazione. Un certo sforzo di flessibilità e personalizzazione dei contenuti e delle procedure dell’intervento è stato dunque richiesto. Implicazioni: L’intervento sviluppato mostra potenzialità nel supportare il coinvolgimento attivo dei pazienti anziani, ma necessita di ulteriori studi relativi all’implementabilità sul lungo termine e alla sua efficacia. / Aim: To contribute knowledge about how patient engagement support can be provided to older adults, by describing the contents of interventions aimed at patient engagement for older adults, developing a patient engagement intervention, and studying its early-stage implementation. Methods: In study 1, a systematic review of the literature was performed. In study 2, a qualitative study with focus groups involving healthcare professionals and individual interviews to older adults was conducted to develop the intervention. In study 3, a qualitative study of a participatory process was accomplished to explore the early-stage implementation of the intervention in one integrated-care organization. Results: The main finding of study 1 was that the emotional dimension was less used than the educational and behavioural dimensions among the 35 patient engagement interventions for older adults. The findings from the study 1 were used, together with a theory of patient engagement, to develop a draft of an individual patient engagement intervention for older adults (PHEinAction). In the study 2, the views of healthcare professionals and older adults were used to refine and finally endorse it. The final version of PHEinAction consisted of at least two face-to-face one hour individual sessions one month apart, plus a set of personalized home-based exercises aimed to facilitate a range of emotional, behavioural, cognitive changes for patient engagement. Finally, the study 3 observed how the existing patient education practice of inpatient, outpatient and territorial settings differently challenged the implementation. A certain degree of flexibility of PHEinAction’s contents and procedures was required to address these challenges. Implications: PHEinAction shows promise as an intervention to improve patient engagement in older adults. However, more research is needed, especially focusing on long-term implementation studies and evaluation of effects with experimental studies.

Comunicar aos pacientes os riscos de reações adversas dos medicamentos é fundamental para a tomada de decisão adequada dos pacientes, pois a informação aprimora seu conhecimento e influencia suas atitudes, auxiliando os pacientes a melhorar sua saúde. Estudos têm demonstrado que existem grandes diferenças individuais na interpretação de termos que são comumente usados para expressar risco de experimentar uma reação adversa e que a compreensão é influenciada pela apresentação da informação, bem como por fatores relacionados ao indivíduo, como o letramento em saúde e a habilidade numérica. O objetivo geral deste estudo foi avaliar o efeito de diferentes formatos de informações escritas na compreensão de reações adversas de medicamentos pelo usuário. Primeiramente foi realizada uma revisão sistemática a fim de avaliar as evidências do efeito de diferentes formas de informar sobre reações adversas na compreensão dessas informações pelo usuário de medicamentos. Em uma segunda etapa, foi realizado ensaio clínico randomizado duplo- cego (n=393), para avaliar a eficácia de três formatos, baseados nos resultados preliminares da revisão sistemática. Para a realização da revisão sistemática foram utilizadas as bases PubMed, Cochrane, EMBASE, SCIELO, LILACS, CINAHL, IPA, Web of Science, SCOPUS, OneFile, EBSCO e Clinical Trials, Proquest e Open Grey. O período de cobertura foi do início da base de dados até setembro de 2015. Foram incluídos na revisão estudos que comparassem a compreensão de dois ou mais formatos de informações escritas sobre a frequência de reações adversas, fornecidos a dois ou mais grupos de pacientes, com qualquer delineamento. Ao total, 23 ensaios clínicos realizados nos Estados Unidos e Reino Unido foram incluídos, envolvendo 14.342 participantes. Entre os estudos incluídos, 14 compararam formatos numéricos e nominais em diferentes combinações, 5 compararam formatos gráficos e os demais apresentaram outros formatos, como risco complementar versus risco total, diferentes formatos no denominador (100 x 1000), risco absoluto, risco relativo e NNH (número necessário para causar dano). A grande heterogeneidade entre os estudos não tornou possível a metanálise dos dados. Formatos numéricos demonstraram superioridade aos não-numéricos (nominal) na compreensão das informações. O uso de formatos gráficos comparados a textos também melhoraram a compreensão. A partir dos estudos avaliados nessa revisão, ainda não é possível definir qual o melhor formato para comunicar sobre reações adversas a medicamentos. Por exemplo, não há estudos comparando os formatos verbal, numérico, combinado e gráfico, o que favoreceria uma avaliação sobre o formato mais adequado à compreensão dos usuários de medicamentos. Na segunda etapa, foi realizado um ensaio clínico randomizado duplo-cego, em paralelo, unicêntrico. Usuários adultos de uma farmácia escola, com capacidade leitora avaliada pelo instrumento de Avaliação Breve de Alfabetismo em Saúde em Português para adultos (SAHLPA), foram randomizados para um dos três grupos: nominal + faixa de porcentagem, faixa de porcentagem e porcentagem absoluta. O desfecho principal foi a compreensão, avaliada como essencial (impressão geral da informação), literal (numérica especificamente), e classificada em adequada e inadequada. A percepção dos usuários quanto à satisfação da informação, intenção de tomar o medicamento, facilidade de entendimento e clareza das informações recebidas foram avaliadas como desfechos secundários. Foi utilizado teste de análise da variância (ANOVA) e qui-quadrado de Person para a comparação das diferenças. Os participantes foram recrutados no período entre junho a outubro de 2015 e foram entrevistados durante 35 minutos, em média; no total 393 participantes foram randomizadas para um dos três grupos. A compreensão essencial adequada foi de 65,6% para o formato nominal + faixa de porcentagem (n=128), 63,4% para faixa de porcentagem (n=131), 62,3% para porcentagem absoluta (n=131), sem diferença estatisticamente significativa entre os formatos (p >0,05). A compreensão literal adequada foi de 53,9% para o formato nominal + faixa de porcentagem, 44,3% para faixa de porcentagem e 48,5% para porcentagem absoluta, também sem diferença estatisticamente significativa entre os formatos (p >0,05). Os participantes que receberam o formato de porcentagem absoluta consideraram a informação mais clara (p<0,05), em comparação ao outros grupos. Não houve diferença estatisticamente significativa entre os três formatos quanto aos desfechos secundários. Os resultados não demonstram diferenças na compreensão das informações entre os três formatos avaliados, portanto, os três formatos avaliados são equivalentes para informar a frequência das reações adversas. No entanto, a baixa compreensão apontada pelos resultados, demonstra que formatos alternativos precisam ser avaliados. Levando em consideração que os formatos numéricos demonstram-se mais eficazes em relação aos não-numéricos, e que os formatos gráficos podem auxiliar na compreensão de informações sobre reações adversas, um formato alternativo para informar as reações adversas relacionadas aos medicamentos precisa ser desenvolvido, a partir das necessidades dos usuários. É preciso considerar as preferências, nível de letramento em saúde e habilidades numéricas dos usuários de medicamentos. A disponibilização das bulas não deve ser apenas para cumprir as prerrogativas legais, mas sim deve cumprir seu papel de informar os usuários, de maneira eficiente, com conteúdo e formato adequados e compreensíveis. Por isso, é imprenscindível que as informações e seus formatos sejam avaliados pelos usuários de medicamentos, antes de serem empregados em materiais informativos, como a bula de medicamentos. / Communicate to patients the risks of side effects of drugs is critical for making appropriate decision by patients because the information enhances their knowledge and influence their attitudes, helping patients improve their health. Studies have shown that there are large individual differences in the interpretation of terms that are commonly used to express risk of experiencing a side effects and that understanding is influenced by the presentation of information, as well as factors related to the individual, such as literacy in health and numeracy. This study aim was to evaluate the effect of different formats of written information in the understanding of side effects by medicines user. First, was conducted a systematic review to assess the evidence of the effect of different ways to report side effects understanding of this information by the medicines user. In a second moment, clinical trial was conducted double-blind randomized (n = 393) to evaluate the efficacy of three formats, based on preliminary results of a systematic review. For the systematic review were used the MEDLINE (PubMed), Cochrane, EMBASE, SCIELO, LILACS, CINAHL, IPA, Web of Science, Scopus, OneFile, EBSCO and Clinical Trials, and Proquest Open Grey. The coverage period was the beginning of the database until September 2015. Were included in the review studies comparing the understanding of two or more written information formats on the frequency of adverse reactions, provided two or more groups of patients, any design. A total of 23 clinical trials in the United States and the United Kingdom were included, involving 14,342 participants. Among the included studies, 14 compared numerical and verbal formats in different combinations, 5 compared graphic formats and others showed other formats such as additional risk versus overall risk, different formats in the denominator (100 x 1000), absolute risk, relative risk and NNH (number needed to harm), positive versus negative frames. The heterogeneity between the studies did not make possible the meta-analysis of the data. Numerical forms demonstrated superiority to non-numeric in understanding the information. The use of graphics formats compared to texts also improved understanding. From the studies evaluated in this review, it is not possible to determine the best format for reporting on side effects. For example, there are no studies comparing the verbal descriptors, numeric, graphic and combined, which would favor an evaluation of the most appropriate format for the understanding of medicines users. In the second stage, was conducted a clinical trial randomized double-blind, parallel, single-center. Adult users of a pharmacy school, with reading capacity assessed by the Brief Assessment Instrument Literacy Health in Portuguese for adults (SAHLPA), were randomized to one of three groups: verbal + range of percentage, percentage range and absolute percentage. Main outcome variables were verbatim (specific numerical) and gist knowledge, classified as adequate and inadequate. The perception of users and the satisfaction of information, intended to take the drug, ease of understanding and clarity of information received were assessed as secondary endpoints. Was used analysis of variance test (ANOVA) and chi-square Person to compare the differences. Participants were recruited between June and October 2015 and were interviewed for 35 minutes on average; in total 393 participants were randomized to one of three groups. The adequate levels of gist knowledge was 65.6% and 53.9% for nominal format + percentage range (n = 128), 63.4% and 44.3% for percentage range (n = 131), 62 3% and 48.5% for absolute percentage (n = 131), with no statistically significant difference between the groups (p> 0.05). The adequate levels of verbatim knowledge was 53.9% for the nominal format + percentage range, 44.3% for percentage range and 48.5% for absolute percentage, also with no statistically significant difference between the groups (p> 0.05 ). Participants who received absolute percentage format considered the clearest information (p <0.05) compared to the other groups. There was no statistically significant difference between the three formats as the secondary outcomes. The results do not show differences in the understanding of information among the three formats, so the three evaluated formats are equivalent to inform the frequency of adverse reactions. However, poor understanding of the results indicated shows that alternative formats must to be evaluated. Taking into account that numerical formats are more effective than numerical ones, and that graphical formats can assist in understanding information on adverse reactions, an alternative format for reporting adverse drug-related reactions needs to be developed from needs of medicine users. It is necessary to consider the preferences, level of literacy in health and numerical abilities of the users of medicines.