Introdução: A asma e a DPOC são doenças crônicas inflamatórias que afetam a qualidade de vida dos pacientes. O tratamento medicamentoso é feito, em sua maioria, por via inalatória utilizando para isso os dispositivos inalatórios. O uso incorreto dos dispositivos inalatórios diminui a eficácia dos medicamentos, o que pode ocasionar a não aderência dos pacientes ao tratamento. Vários tipos de programas educativos para asma e DPOC têm sido desenvolvidos, diferenciando-se quanto à forma de abordagem, à situação em que a doença é atendida e aos desfechos considerados. O farmacêutico por meio de um programa educacional pode orientar os pacientes sobre a técnica correta dos dispositivos inalatórios e auxiliar este paciente na adesão ao tratamento. Objetivos: Realizar a compilação e sistematização dos resultados dos trabalhos apresentados pelo programa de atenção farmacêutica aos pacientes asmáticos e portadores de DPOC do ICHC FMUSP e do programa de pós-graduação de Fisiopatologia Experimental. Método: estudo retrospectivo e descritivo dos trabalhos de conclusão dos alunos do Curso de Aprimoramento Profissional em Farmácia Hospitalar e Introdução a Farmácia Clínica da Divisão de Farmácia do ICHC FMUSP e do programa de pós-graduação de Fisiopatologia Experimental da Faculdade de Medicina da USP. Estes estudos desenvolveram a temática da atenção farmacêutica e educação em asma e em DPOC, apresentados entre os anos de 2004 a 2012 que não tiveram artigos ou capítulos de livros publicados. Resultados: Foram enviados três capítulos para publicação no livro Atenção Farmacêutica - Gestão e Prática do HCFMUSP e um artigo será publicado no Jornal Brasileiro de Pneumologia. Conclusão: Publicações acadêmicas com o tema atenção farmacêutica ao paciente portador de doenças respiratórias crônicas demonstram a importânica da orientação/ educação desses pacientes quanto ao tratamento de suas doenças respiratórias / Introduction: Asthma and COPD are chronic inflammatory diseases that affect the quality of life of patients. Drug treatment is done mostly by inhalation, using for it inhalation devices. Incorrect use of inhalers decreases the effectiveness of medications which can cause non-adherence of patients to treatment. Various types of educational programs for asthma and COPD have been developed, differing on the mode the approach, the situation in which the disease is answered and the outcomes considered. The pharmacist through an educational program can educate patients about the proper technique of inhalation devices and assisting the patient to adhere to treatment. Objectives: Perform the compilation and systematization from studies data submitted by the pharmaceutical care program for patients with asthma and COPD developed by pharmacists from course of improvement of the Division of Pharmacy ICHC USP and also by the program of graduate Experimental Pathophysiology, Faculty of Medicine, USP. Method: A retrospective, descriptive study with the outcomes of studies of the students that completed the course in Professional Development Course in Hospital Pharmacy and Introduction to Clinical Pharmacy, of Division of Pharmacy of ICHC USP and the program graduate in Experimental Pathophysiology, Faculty of Medicine of USP. The studies show the theme of pharmaceutical care and asthma education and COPD, submitted between the years 2004 to 2012 and who had no articles or book chapters related books published. Results: three book chapters were sent for publication in the book Pharmaceutical Care - Management and Practice HC FMUSP and one article will be published in the Brazilian Journal of Pulmonology. Conclusion: academic publications on the theme pharmaceutical care to patients with chronic respiratory diseases shows the importance orientation/education of patients regarding the treatment of their respiratory diseases

Um fosso separa o desenvolvimento teórico-metodológico na Educação e Comunicação de sua prática aplicada à Saúde, usualmente, centrada na transmissão de informações para a mudança de comportamento. Nesta pesquisa qualitativa, exploramos o uso do conceito de competência para deslocar o binômio informação - comportamento para uma articulação de outra ordem: problema – saber - ação. Levantamos as competências requeridas para o autocuidado no diabetes, na opinião de diabetólogos, e identificamos as já disponíveis entre portadores, por meio de grupo focal e entrevista. Os resultados mostram a riqueza de saberes e competências que possuem os portadores, o que pode abrir possibilidades novas de diálogo com os profissionais de saúde, bem como promissoras perspectivas de aplicação no campo da inteligência coletiva. / A huge gap separates the theoretical and methodological development in the field of Education and Communication from its practice in health centers, usually focused in the transmission of information aiming at behavioral changes. In our qualitative research we explored the use of competence concept to change the binomial information-behavior into problem- knowledge- action. The requested competences towards diabetic care according to diabetes specialists and those available among diabetics obtained through focus groups and interviews were identified. The vast knowledge and competence of the diabetics shown by the results lead to several new possibilities of dialog with healthcare professional as well as promising prospects of actual application in the field of collective intelligence

Abstract The aim of this thesis was to measure patient reported outcomes, such as health related quality of life and general diabetes knowledge of elderly diabetes mellitus type 2 (DMT2) patients in Slovenia. Patient reported outcomes demonstrate patient perspectives when evaluating the delivery of care. In Slovenia, a new, multidisciplinary model of chronic care was introduced in 2011, which yet needs to demonstrate the efficiency, care improvement and cost reduction. Thus, another aim of the study was to research if multidisciplinary teams in diabetes care are economically viable. To achieve the above, the study was divided into 4 subprojects. Firstly, the general level of diabetes knowledge of elderly DMT2 patients (n=179) was measured. Secondly, the reliability and validity of generic, European Quality of Life- 5 Dimensions (EQ-5D), and disease specific, Audit on Diabetes Dependent Quality of Life (ADDQoL ) instruments were examined. Thirdly, health related quality of life of elderly diabetic patients (n=285) was assessed. Fourthly, the systematic literature review on the cost-effectiveness of multidisciplinary teams was conducted. The data were collected during the period 2011–2012. The main contributions of the current thesis can be summarised as follows: This was the first study to measure general diabetes knowledge of elderly DMT2 patients in Slovenia. The results showed that the place of living does not have an impact neither on diabetes knowledge nor the health related quality of life of these patients. Secondly, a pioneering example of measuring health related quality of life (HRQoL) in elderly diabetic patients in Slovenia, using a validated and reliable instrument (ADDQoL) was provided. A study to evaluate the relationships between diabetic and other co-existing chronic medical conditions on health related quality of life was performed. As part of that study, the reliability and validity of the instruments (EQ-5D and ADDQoL) were measured, and the analysis showed that both instruments are reliable. Thirdly, a systematic way of finding evidence for understanding the cost-effectiveness of multidisciplinary teams was applied. The results of the literature review show weak improvements in the economic outcomes. In general, the thesis contributes to the improved understanding of patient reported outcomes in elderly diabetic patients, which can be a measure in assessing diabetes care program in Slovenia, and offers a basis for a national evaluation of the Model Practices. Furthermore, patient reported outcomes of elderly diabetic patients is important to Slovenian decision makers to identify and implement appropriate interventions for achieving better management of diabetes and ultimately improving the quality of life of diabetes patients. / Tiivistelmä Tutkimuksen tarkoitus oli mitata iäkkäiden tyypin 2 diabetespotilaiden itse ilmoittamia tuloksia, kuten terveyteen liittyvä elämänlaatu ja yleinen diabetekseen liittyvä tietämys Sloveniassa. Tulokset valottavat potilaiden näkökulmaa hoidon arvioinnissa. Sloveniassa otettiin 2011 käyttöön monitieteellinen hoitomalli, jonka tehoa sekä kykyä parantaa hoitoa ja vähentää hoitokustannuksia ei ole osoitettu. Toisena tavoitteena oli selvittää, onko moniammatillisten tiimien käyttö diabeteshoidossa taloudellisesti järkevää. Tutkimus jaettiin neljään osaprojektiin. Ensin mitattiin iäkkäiden tyypin 2 diabetespotilaiden (n=179) yleistä diabetestietämystä. Toiseksi selvitettiin geneerisen European Quality of Life- 5 Dimensions- (EQ-5D) ja diabeteskohtaisen ADDQoL -mittarin luotettavuus ja validiteetti. Kolmanneksi arvioitiin iäkkäiden diabetespotilaiden (n=285) terveyteen liittyvää elämänlaatua. Neljänneksi tehtiin moniammatillisten tiimien kustannus¬tehokkuutta koskeva systemaattinen kirjallisuuskatsaus. Tiedot kerättiin vuosina 2011–2012. Tulokset voidaan tiivistää seuraavasti: Kyseessä oli ensimmäinen tutkimus, jossa mitattiin iäkkäiden tyypin 2 diabetespotilaiden yleistä diabetestietämystä Sloveniassa. Tulosten mukaan asuinpaikka ei vaikuta potilaiden diabetestietämykseen tai terveyteen liittyvään elämänlaatuun. Toiseksi, Sloveniassa toteutettiin pioneerihanke, jossa mitattiin iäkkäiden potilaiden terveyteen liittyvää elämänlaatua (HRQoL) validoidun ja luotettavan instrumentin (ADDQoL) avulla. Tutkimuksessa selvitettiin diabeteksen ja muiden pitkäaikaissairauksien yhteisvaikutusta terveyteen liittyvään elämänlaatuun. Osana tutkimusta selvitettiin instrumenttien (EQ-5D ja ADDQoL) luotettavuus ja validiteetti. Molemmat osoittautuivat luotettaviksi. Kolmanneksi, tutkimuksessa etsittiin systemaattisesti näyttöä moniammatillisten tiimien kustannustehokkuuden arvioimiseksi. Kirjallisuuskatsauksen mukaan taloudellinen tulos paranee vain vähän. Tutkimus lisää tietoa potilaiden ilmoittamista tuloksista iäkkäiden diabetespotilaiden kohdalla, mitä voidaan käyttää diabeteshoito-ohjelman arvioinnissa Sloveniassa sekä mallikäytäntöjen kansallisen arvioinnin perustana. Diabetespotilaiden itse ilmoittava terveystieto on Slovenian päätöksentekijöille tärkeää sopivien interventioiden löytämisessä ja toteuttamisessa, kun halutaan parantaa diabeteshoitoa ja potilaiden elämänlaatua.

Lorsqu’un médecin diagnostique une pathologie chronique tel un diabète ou une artérite, pathologies choisies dans cette recherche, le patient entame, de fait, un processus d’apprentissage de la pathologie et de sa nouvelle vie avec ce diagnostic.Pourtant, ce processus diffère d’un patient à un autre et aboutit à des conduites diverses malgré des recommandations médicales consensuelles. Les professionnels de santé, en effet, ont des objectifs communs pour ces pathologies chroniques qui sont que les patients arrivent à avoir une alimentation équilibrée, pratiquent une activité physique quotidienne, s’abstiennent de tout comportement tabagique et prennent le traitement médicamenteux prescrit. Dans ce but, un certain nombre d’actions sont mises en place,de la campagne de santé publique au travail médical dans un cabinet libéral en passant par des programmes construits d’éducation. Ce que le patient fait grâce (ou malgré)cette éducation est l’objet de cette recherche.À la croisée des domaines de la santé et de l’éducation, nous avons choisi une méthodologie variée pour rendre compte à la fois de l’aspect anthropologique de cet apprentissage en considérant ce qui ne dépend pas du patient et à la fois de l’aspect didactique en observant le résultat des différentes situations sollicitées pour faire changer les patients. La première partie, centrée sur les aspects théoriques, montre la nécessité de considérer le corps dans l’éducation lorsqu’elle est dite thérapeutique.Pour comprendre ce qui est généralement peu ou pas interrogé par les acteurs de l’éducation thérapeutique, nous avons examiné l’ancrage historique des rapports entre le corps, la santé et l’éducation pour mieux étudier le « devenir malade » des patients considérés dans notre étude. Après un approfondissement historique du soin, de l’éducation puis du corps, les rapports actuels entre le corps et la santé ont été observés à l’aide des proverbes usuels, des livres en sciences humaines et sociales, de l’image publicitaire ainsi que des articles de presse. Les processus de transformation des corps malades pouvaient alors être compris selon cet ancrage et l’environnement éducatif dans lequel se situent actuellement les patients. Dans la troisième partie nous avons utilisé les récits des patients rencontrés. La mise en récit de la maladie est le dernier temps méthodologique. Grâce à l’histoire, à la compréhension du monde environnant les patients et à leur récit de vie, nous avons pu dégager des styles de discours. Trois grands styles sont repérés : celui des « experts » qui présentent une centration sur les savoirs,celui des « actifs » avec une centration sur l’activité physique et celui des « mangeurs »avec une centration sur l’alimentation. La compréhension de ces différents styles de discours est à mettre en lien avec les changements de conduites considérés sur le temps long de la pathologie chronique, dans le cadre de la dernière partie de ce travail. Ces modes de changements, tout au long du reste de la vie des patients, prennent différentes formes caractéristiques que nous avons pu dégager selon certains chemin explicatifs.L’ensemble des résultats permet de montrer l’intérêt d’interroger l’éducation thérapeutique actuelle et ses programmes ainsi que les concepts qui y sont attachés en utilisant le corps comme entrée. / As soon as a doctor diagnoses a chronic disease such as diabetes or arteritis, pathologies on which we shall focus in our research, patient begins a learning process of the pathology and their new life with this diagnosis. However this process differs from one patient to another and leads to diverse behaviours despite consistent medical recommendations. In fact, health professionals do seek common objectives: a balanced diet, daily physical activities, tobacco abstinence and a treatment medical that is followed. To reach this goal, various actions are put in place such as public health campaigns, work in the doctor’s office or Therapeutic Patient Education (TPE) programs. Our research focuses on how patients may react to (and benefit), from such education. At the junction of the health and education domains, we choose a diverse methodology to account for both the anthropological side of this learning experience, considering what does not depend on the patient, as well as its, the didactic side, thus observing the outcome of different pedagogical activities. The first part, focused on theory, demonstrates how considering the body is essential in education, especially in therapeutic education. To understand what is typically rarely considered, if not at all by TPE’s actors, we explore the historical roots of relationships between body, health and education to then better understand “becoming ill” as it relates to patients considered as part of our studies. After a historical investigation of cure, education and then the body, actual relationships between body and health are examined with using usual saying, books of Human and social sciences, advertisement pictures and newspaper articles. The transformation processes of sick bodies can then be understood from this viewpoint as well as through the patient’s educational environment. In the third part we used disease narratives from patients we have met. The disease storytelling within life stories is the last methodology step. In light of history, and through the patients’ environment and life stories, we could extract different speech styles that make sense when body speech is analysed in light of various anthropological data. Three major style types are identified: “experts” with centration on knowledge, “actives” with centration on physical activities and “eater” with centration on food. Understanding these style types requires considering behaviour changes in the long time of chronic pathologies, as done in the last part of our work. These different modes of change throughout the patients’ life present different characteristics, which we have been able to discern from various explanation paths. All results together allow us to demonstrate the value there is in questioning current TPE programs and its related concepts using the body as an input.

Les traitements en cancérologie sont soumis au même risque de non-adhérence que les autres traitements ambulatoires au long cours. Ce travail de thèse a pour objectifs : i) d'étudier les facteurs de risque de dis-adhérence ; ii) de développer un programme d'éducation du patient (PEP) permettant d'améliorer l'adhérence des patients. La première étude étudie les facteurs de risque de non adhésion liés à l'interaction avec le système de soin ; les pratiques des oncologues français relatives à la prescription, la surveillance et l'accompagnement des patients ne sont pas suffisantes actuellement pour assurer un bon niveau de sécurité et d'adhérence des patients sous anticancéreux oraux. Les facteurs de risque de non adhésion liés au patient et au traitement sont étudiés dans la deuxième étude, chez des patients traités par capécitabine pour cancer du sein ou du côlon. Les patients actifs avec un niveau éducatif élevé seraient moins adhérents que les 2 autres. L'ensemble des patients sous capécitabine ont des comportements de sur-adhérence qui mettent en péril leur vie à cause des toxicités induites. La troisième étude présente l'évaluation d'un PEP construit selon une méthodologie standardisée. Ce programme démontre une efficacité dans l'amélioration des connaissances des patientes et de la confiance dans le traitement. Cette étude pilote a permis de modifier ce programme pour qu'il soit plus efficace. Identifier les facteurs de risque de non adhérence aux traitements anticancéreux oraux, à l'aide de méthodologies valides et adaptées au contexte, permet de construire des stratégies d'amélioration de l'adhérence ciblées et efficaces, en faisant levier sur ces facteurs / Non-adherence to oral chemotherapies can lead to lowered efficacy and increased risk of adverse events. The objective of this PhD work was twofold : i) to identify dis-adherence risk factors ii) to develop and test the feasibility of a validated, tailored therapeutic educational program with the aim of improving adherence to oral endocrine adjuvant chemotherapy in breast cancer. A survey was carried out to collect information on drug prescription, administration and surveillance, in order to identify non- adherence risk factors related to health professional behaviors : the majority of prescribers followed no standards in prescription writing, safety monitoring, toxicity prevention and patient education. A cohort study was carried out to identify adherence profiles among patients treated with capecitabine, using a mixed method. A profile of low adherence appeared (highly educated patients, with an irregular active life, with occupied relatives) and absolutely all patients showed an over-adherence profile (with a high risk of toxicity). The pilot study assessing the development and the feasibility of an educational program tailored to patients’ needs led to the improvement of the program : an extra session dealing with anxiety was built, and a new recruitment method was developed. Otherwise, the program succeeded in improving knowledge and trust in the treatment. This PhD work succeeded in identifying new dis-adherence risk factors, thanks to qualitative-quantitative methods. Those risk factors were incorporate in the development process of an educational program, in order to tailor it to the targeted population. This method should guarantee the efficacy of the program on patient’s adherence

Background: Patients diagnosed with melanoma frequently search the internet for treatment information, including novel and complex immunotherapy. However, health literacy is limited among half of the German population, and no assessment of websites on melanoma treatment has been performed so far. Objective: The aim of this study was to identify and assess the most visible websites in German language on melanoma immunotherapy. Methods: In accordance with the common Web-based information-seeking behavior of patients with cancer, the first 20 hits on Google, Yahoo, and Bing were searched for combinations of German synonyms for “melanoma” and “immunotherapy” in July 2017. Websites that met our predefined eligibility criteria were considered for assessment. Three reviewers independently assessed their quality by using the established DISCERN tool and by checking the presence of quality certification. Usability and reliability were evaluated by the LIDA tool and understandability by the Patient Education Materials Assessment Tool (PEMAT). The Flesch Reading Ease Score (FRES) was calculated to estimate the readability. The ALEXA and SISTRIX tools were used to investigate the websites’ popularity and visibility. The interrater agreement was determined by calculating Cronbach alpha. Subgroup differences were identified by t test, U test, or one-way analysis of variance. Results: Of 480 hits, 45 single websites from 30 domains were assessed. Only 2 website domains displayed a German quality certification. The average assessment scores, mean (SD), were as follows: DISCERN, 48 (7.6); LIDA (usability), 40 (2.0); LIDA (reliability), 10 (1.6); PEMAT, 69% (16%); and FRES, 17 (14), indicating mediocre quality, good usability, and understandability but low reliability and an even very low readability of the included individual websites. SISTRIX scores ranged from 0 to 6872 and ALEXA scores ranged from 17 to 192,675, indicating heterogeneity of the visibility and popularity of German website domains providing information on melanoma immunotherapy. Conclusions: Optimization of the most accessible German websites on melanoma immunotherapy is desirable. Especially, simplification of the readability of information and further adaption to reliability criteria are required to support the education of patients with melanoma and laypersons, and to enhance transparency.

Indiana University-Purdue University Indianapolis (IUPUI) / Living donors have contributed about 6,000 kidneys per year in the past 10 years, but more than 100,000 individuals are still waiting for a kidney transplant. Living kidney donors undergo a major surgical procedure without direct medical benefit to themselves, but comprehensive follow-up information on living donors’ health is unfortunately limited. Expert recommendations suggest capturing clinical information beyond traditional sources to improve surveillance of co-morbid conditions from living kidney donors. Currently the United Network for Organ Sharing is responsible for collecting and reporting follow-up data for all living donors from U.S. transplant centers. Under policy implemented in February of 2013, transplant centers must submit follow-up date for two years after donation, but current processes often yield to incomplete and untimely reporting. This dissertation uses a statewide Health Information Exchange as a new clinical data source to 1) retrospectively identify a cohort of living kidney donors, 2) understand their follow-up care patterns, and 3) observe selected clinical outcomes including hypertension, diabetes and post-donation renal function.

La préadaptation vise à optimiser la santé d’un individu entre le diagnostic de cancer et la chirurgie. L’approche multimodale, qui cible deux composantes ou plus comme l’activité physique, la nutrition et le soutien psychosocial, est recommandée. Ce type d’intervention est généralement proposé en clinique et en suivi individuel, ce qui peut limiter l’accessibilité et les bénéfices tirés d’une pratique d’activité physique en groupe. Pour mieux répondre aux besoins des individus ayant reçu un diagnostic de cancer, nous avons développé et testé un programme de télé-préadaptation multimodale en groupe en évaluant l’implantabilité (acceptabilité, fidélité, faisabilité) et les effets préliminaires (capacité physique, santé mentale, soutien social, activité physique). Les participants (n=25) étaient évalués virtuellement par un kinésiologue et complétaient un questionnaire au départ (T1), pré-chirurgie (T2) et 12 semaines post-chirurgie (T3). Trois séances en groupe de 90 minutes par semaine, avec une composante exercice et éducative, étaient supervisées virtuellement par un kinésiologue. Des analyses descriptives et statistiques (test-T pairé et Wilcoxon) ont été réalisées. L’évaluation de l’implantabilité suggère un niveau élevé d’acceptabilité (satisfaction, utilité, sécurité, intentions futures en activité physique et recommandation à un proche (88%-100%)); de fidélité (dispensé comme prévu, mais quelques adaptations effectuées); et de faisabilité (rétention (98%), adhérence (70%)). La principale barrière est le faible taux de référencement de patients éligibles (31%). Les effets préliminaires suggèrent une amélioration au 2-minute Step Test (+18,86 pas), au 30-second Sit-to-Stand (+1,10 répétition) et pour le volume hebdomadaire d'activité physique modérée (+104,80 minutes) entre T1 et T2, ainsi qu’une diminution du niveau de stress (-0,53) et de la qualité de vie (-8,68) entre T1 et T3. L’évaluation de la mise à l’échelle et de la viabilité de ce programme est envisageable pour réduire les barrières à l’activité physique et les inégalités d’accès aux soins en contexte de cancer. / Prehabilitation aims to optimize an individual's health between cancer diagnosis and surgery. A multimodal approach, which targets two or more components such as physical activity, nutrition and psychosocial support, is recommended. This type of intervention is usually offered in-clinic and with one-on-one follow-ups, which may limit the accessibility and benefits of a group-based physical activity program. To better meet the needs of individuals diagnosed with cancer, we developed and tested a virtual multimodal group prehabilitation program assessing the implementability (acceptability, fidelity, feasibility) and preliminary effects (physical capacity, mental health, social support, physical activity). Participants (n=25) were assessed virtually by a kinesiologist and completed a questionnaire at baseline (T1), pre-surgery (T2) and 12 weeks post-surgery (T3). Three 90-minute group sessions per week were virtually supervised by a kinesiologist and comprised an exercise and educational component. Descriptive and statistical analyses (paired t-test and Wilcoxon) were performed. The evaluation of implementability suggests a high level of acceptability (satisfaction, usefulness, safety, future physical activity intentions and recommendation to a relative (88%-100%)); fidelity (delivered as planned, but some adaptations were made); and feasibility (retention (98%), adherence (70%)). The main barrier is the low rate of eligible referrals (31%). Preliminary effects suggest an improvement in the 2-minute Step Test (+18.86 steps), the 30-second Sit-to-Stand (+1.10 repetitions), and the moderate physical activity weekly volume (+104.80 minutes) between T1 and T2, as well as a decrease in stress level (-0.53) and quality of life (-8.68) between T1 and T3. Scalability and viability can be assessed and show promise to reduce barriers to physical activity and inequities in access to care in the cancer setting.

No description available.

This study addresses the effectiveness of communication between the team (doctors, sisters and social workers) and patients at the Breast Cancer Clinic of the Johannesburg Hospital. Tue needs of patients were highlighted, as well as the role of care-giver, both as a group and in their separate disciplines, in attempting to meet these needs. Tue empirical survey was carried out through the use of questionnaires as well as interview schedules. Patients, doctors, nurses and social workers were used as respondents. Results indicated that the majority of patients' needs for information and support were met by the team in general; however, a need for further social work intervention seemed to be apparent. In addition, several barriers were found to inhibit both team-patient and inter-team communication. Tue researcher used the information gathered in this study to make recommendations that will facilitate improved communication in the clinic, with specific reference to the role of the social worker. / Social Work / M.A.(Social Science: Mental Health)