A saúde no Brasil se dá por meio de um sistema único, com base jurídica e apoio na Constituição Federal. A saúde é colocada como Direito de todo o cidadão, e para que tais Direitos sejam garantidos, organizam-se modelos visando à operacionalização dos serviços. O primeiro nível no Brasil é denominado Atenção Básica (AB), com sua base conceitual vinda da Atenção Primária à Saúde (APS). Ela é colocada como a porta de entrada preferencial do sistema, como coordenadora do cuidado, com um território delimitado e exercida nas Unidades Básicas de Saúde (UBS) e/ou Unidades de Saúde da Família (USF). Seguindo a diretriz da descentralização, é gerida pelo município e com isso espera-se que as ações sejam mais qualificadas e resolutivas, uma vez que o município tem maior proximidade e conhecimento das necessidades de saúde de sua população. O objetivo do trabalho é conhecer e analisar como está organizada a produção teórica da Saúde Coletiva no Brasil acerca da construção social da demanda por serviços de saúde na Atenção Básica, criando-se assim uma referência a fim de trazer o assunto à discussão. A pesquisa foi feita utilizando-se os termos relacionados ao problema inicial: demanda em saúde, atenção básica e modelos tecno-assistenciais em saúde. Os conceitos serão apresentados de forma mais aprofundada por meio da revisão bibliográfica necessária para que aqueles que escrevem, produzem e vivem os termos que são aqui utilizados possam ganhar voz. Além da revisão, serão apresentados dados de documentos, levantados por meio de pesquisas em bancos de dados oficiais. Para a análise optou-se pela hermenêutica dialética, a qual tem na hermenêutica a arte da compreensão, ocupando-se do compreender através não só da interpretação do que o autor quis dizer em seu texto, mas além, dizendo que o pesquisador deve também buscar o que ficou subentendido, no inconsciente. A dialética busca compreender a realidade, por meio da transformação e da estranheza que ocorrem no interior dos processos, trabalhando com a quantidade e a qualidade como noções intrínsecas a qualquer objeto. Espera-se do serviço de saúde que este reconheça e resolva, na medida do possível, os problemas de saúde da população. E da AB esperamos que seja a captadora de boa parte das condições que afetam a saúde das pessoas. Temos no Brasil, a proposição da Política Nacional de Atenção Básica (PNAB) a qual enuncia o acesso universal e a atenção às necessidades de saúde como parte dos fundamentos e diretrizes da AB. Espera-se que esta seja uma construção conjunta trabalhador e usuário de modo a produzir saúde dentro das instituições e pelo território que os circunda. / Health in Brazil is set asa unified system,which is run under a legal basis and is protected by the Federal Constitution. It is placed as a Right to every citizen, and hence, models are defined so thatservices can be providedto assure that Right. The first level in Brazil is called AtençãoBásica (AB) (Basic Attention), with its basic concept coming from AtençãoPrimária à Saúde (APS) (Primary Attention to Health). It is said to be the system main front door, working as a care coordinator with a delimited territory and practiced in the UnidadesBásicas de Saúde (UBS) (Basic Health Units) and/ or in the Unidades de Saúde da Família (USF) (Family Health Units). Following the decentralization guideline, it is managed by the city and, thus, actions are expected to be quality and effective, once the city has greater proximity with and knowledge of the health needs of its population. The objective of the paper is to get to know and analyze how the Brazilian Collective Healths theoretical production aboutthe social construction of the demand of health services in the AtençãoBásica is organized, building, thus,a reference in order to bring the subject to light. The research was carried out by making use of the terms related to the initial problem: health demand, basic attention and techno assistance models in health. The concepts are going to be presented more deeply through the necessary bibliographical review,so that those who write, produce and live the terms used here can have a say. Besides the review, document data, collected through research in official databases, are going to be presented. To the analysis, the dialectical hermeneutics was chosen. By analyzing both fields,we have the hermeneutics as the art of comprehension, having it minding the understanding, not only by interpreting what the author meant in the text, but also by going beyond it and saying that the researcher must also investigate what was implicit, in the subconscious. The dialectics minds understanding the realitythrough transformation and strangeness that happen within the processes, working with quantity and quality as intrinsic notions to any object.It is expected from the health service that it recognizes and solves the health problems of the population to an attainable extent. And from AB we expect it to assist a great part of the conditions that affect peoples health. We have in Brazil the proposition of the PolíticaNacional de AtençãoBásica (PNAB) (Basic Attention National Policy), which enunciates the universal access and the attention to the health needs as part of the fundamentals and guidelines of the AB. It is expected it to be a mutual construction worker and user in a way of producing health within the institutions and throughout the territory surrounding them.

Orientadores: Silvia Maria Santiago, Heleno Rodrigues Corrêa Filho / Tese (doutorado) - Universidade Estadual de Campinas, Faculdade de Ciências Médicas / Made available in DSpace on 2018-08-22T11:46:17Z (GMT). No. of bitstreams: 1 Balista_SalmaReginaRodrigues_D.pdf: 1242471 bytes, checksum: a390bf729fbf36857fc1e2cfd895467e (MD5) Previous issue date: 2013 / Resumo: Essa pesquisa objetiva analisar a atenção em saúde ao trabalhador do mercado informal pelo SUS, no município de Campinas, SP. No mercado informal podem estar presentes riscos e incidências ainda maiores do que no mercado formal; soma-se a isso a falta de proteção previdenciária, o que os caracteriza como um grupo vulnerável, ao qual devem ser dirigidas ações de saúde. O SUS desempenha papel estratégico de inclusão, na medida em que se constitui em política pública com capilaridade capaz de oferecer a integralidade e a universalização da atenção à saúde dos trabalhadores, com ações individuais e coletivas, e estimular e promover o controle social por parte dos trabalhadores. Os objetivos do estudo são identificar quais as categorias de trabalhadores informais que mais demandam atenção em saúde no SUS Campinas, quais os serviços de saúde mais procurados, que ações de caráter individual e coletivo foram dirigidas aos trabalhadores, quais dificuldades os serviços têm em reconhecer o usuário como trabalhador do mercado informal, em notificar os agravos à saúde desses trabalhadores e em desenvolver ações para a atenção integral desse grupo. Pela complexidade da questão, a abordagem metodológica escolhida foi a triangulação de métodos. Os sujeitos da pesquisa são gestores e trabalhadores de saúde, dirigentes sindicais e trabalhadores informais. Para a coleta de dados, utilizamos inquérito em serviços de saúde com utilização de formulário e entrevistas semiestruturadas. Os resultados apontaram a atenção fragmentada; a inexistência de ações de vigilância em saúde voltadas para esse grupo; a forma solitária de construção do itinerário terapêutico pelo trabalhador, passando por vários tipos de serviços de saúde e tendo o serviço de urgência e emergência como importante porta de entrada do sistema; a importância do tempo para seu cuidado; a autonomia dos trabalhadores informais relacionada à sua recuperação para o trabalho; a existência de maior vínculo com profissionais de serviços de referência em reabilitação e saúde do trabalhador; o comprometimento do cuidado integral pela insuficiência da rede de atenção; solidariedade dos profissionais de saúde ao sofrimento / Abstract: This research analyzes the health care worker by SUS, in the informal market, in Campinas/SP. The informal market presents risks and implications even greater than in the formal market, besides that, there is lack of social security protection, which characterizes them as a vulnerable group, to which should be directed health actions. SUS plays the strategic role of inclusion, as it constitutes public policy with capillarity able to offer an integral and universal health care to the workers, with individual and collective actions, and to stimulate and promote social control by workers. The research objectives are to identify which categories of informal workers require more health care in SUS Campinas, which are the most searched health services, which individual and collective actions are done for workers, which difficulties the services have in recognizing the user as workers in the informal market, notifying the health problems of these workers and developing integral care for these workers. Due to the complexity of the issue, the methodological approach chosen was triangulation of methods. The subjects in this research were managers and health workers, union leaders and informal workers. To collect data, we used survey on health services with forms and semi-structured interviews. The results pointed to fragmented care; the lack of health surveillance actions aimed to this group; the lonely way the workers constructs their therapeutic itinerary , going through several types of health services and having the urgency and emergency department as important gateway system; the importance of time to their care; the autonomy of informal workers related to their recovery to work; the greater bond with professional reference services in rehabilitation and occupational health; the commitment of integral care by insufficient care network the solidarity of health professionals to suffering / Doutorado / Saude Coletiva / Doutora em Saúde Coletiva

The diploma thesis contains a comprehensive view of the health system in the Federal Republic of Germany in 1995-2015. The main aim of this work is to establish recommendations for improvement of the Czech health system based on the evaluation of the findings on the German health system. The partial aims of the diploma thesis are the characteristics of the health system and the analysis of income and expenditure in health care in Germany. The thesis is divided into six chapters. The first chapter is focused on the information obtained from professional literature. In particular, it describes the different concepts related to healthcare and its financing. The second chapter focuses on the economic concept and the issue of the health system. The third part contains a description of the country's health system. Here are also some selected data about Germany, organization or authority at federal, state and local levels. The fourth chapter deals with the insurance market in Germany. The fifth part summarizes the fundamental reforms of the health system of the Federal Republic. The last chapter is an analysis of income and expenditure of the health system. This section analyzes the data available from statistics from the German Statistical Office or from multinational organizations such as WHO, OECD or the World Bank.

Socioeconomically deprived women are at greater risk of adverse pregnancy outcomes. To counteract this, attention tends to focus around access (equality) of services. Yet access may not equate with the meaningfulness (equity) of services for women from different socioeconomic backgrounds. Without understanding equity we are not in a position to plan appropriate and equitable care. This study aimed to determine pregnant women's perceptions of the current antenatal provision and to determine if women from the extremes of socioeconomic background perceived their antenatal care differently. Longitudinal interviews were undertaken with multiple, comparative antenatal case studies between January 2007 and April 2009. Cases were primigravida women from ‘least deprived’ (n=9) and ‘most deprived’ (n=12) geographical areas as identified by the Scottish Index of Multiple Deprivation (SIMD 2006). The data were analysed using case study replication analysis. Analysis of categorical data from the sample groups indicated they were less diverse than might have been expected in terms of age and education. However in the key variables of housing tenure, potential income and socioeconomic status based on area of residence, the groups were indicative of the SIMD target populations. The preliminary analysis showed that the sample groups considered the initial General Practitioner contact to be less than adequate and the subsequent utility of antenatal education to be based on self perceived relevance. The substantive analysis showed little difference in access to antenatal services between the ‘least’ and ‘most’ deprived groups but perception of care differed. A key difference concerned the level of ‘engagement’ (defined as personalisation and active involvement in care, power and relationships and health literacy). Using these concepts, engagement was present in most of the ‘least deprived’ group and almost none of the ‘most deprived’ group. In comparison with women from affluent areas, more deprived women described less evidence of: personal connection to their own care; shared decision making; and perceived value in relation to the written educational aspects of antenatal care. In terms of the preliminary analysis, the results suggest that utility of educational material may need to be reviewed to ensure it is relevant to specific needs. Without this relevance, key information may be missed. The substantive analysis suggests that for women from socioeconomically deprived areas, access may be a less useful indicator than engagement when assessing quality of antenatal services. The lack of engagement perceived by those who are most deprived suggests that equity of service has yet to be attained for those who are most in need. Future research needs to be directed to the potential reasons that may undermine equity and engagement in women from lower socioeconomic areas.

Das Dissertationsvorhaben greift zu Beginn einen Praxisfall im Krankenhaus auf und verdeutlicht exemplarisch, dass der Krankenhausarzt in einen Konflikt zwischen ökonomischen und ethischen Anforderungen gerät. Um die Frage beantworten zu können, wie die soziale Praxis der Krankenhausärzte gelingen kann, wird das Problem im ersten Schritt rekonstruiert. Nach der Diskussion verschiedener Lösungsansätze für das Problem im zweiten Schritt, werden im dritten Schritt Anregungen für die Praxis abgeleitet.

Background: To be able to counter the increasing shortage of general practitioners (GPs) in many countries, it is crucial to remain up‑to‑date with the decisive reasons why young physicians choose or reject a career in this field. Materials and Methods: Qualitative content analysis was performed using data from a cross‑sectional survey among German medical graduates (n = 659, response rate = 64.2%). Subsequently, descriptive statistics was calculated. Results: The most frequent motives to have opted for a GP career were (n = 74/81): Desire for variety and change (62.2%), interest in a long‑term bio‑psycho‑social treatment of patients (52.7%), desire for independence and self‑determination (44.6%), positively perceived work‑life balance (27.0%), interest in contents of the field (12.2%), and reluctance to work in a hospital (12.2%). The most frequent motives to have dismissed the seriously considered idea of becoming a GP were (n = 207/578): Reluctance to establish a practice or perceived associated risks and impairments (33.8%), stronger preference for another field (19.3%), perception of workload being too heavy or an unfavorable work‑life balance (15.0%), perception of too low or inadequate earning opportunities (14.0%), perception of the GP as a \"distributor station\" with limited diagnostic and therapeutic facilities (11.6%), perception of too limited specialization or limited options for further sub‑specialization (10.6%), rejection of (psycho‑) social aspects and demands in general practice (9.7%), and perceived monotony (9.7%). Conclusion: While some motives appear to be hard to influence, others reveal starting points to counter the GP shortage, in particular, with regard to working conditions, the further academic establishment, and the external presentation of the specialty.

Impact of demographic changes on healthcare expenditures in the Czech Republic Abstract This work aims to analyse the influence of demographic changes on public healthcare expenditures in the Czech Republic. The first part displays particular factors having effect on healthcare expenditures with a special focus on demographic characteristics. In spite of the fact that the expenditure level seems to be mainly affected by the economic output of particular states and new technology development, while the influence of demographic fluctuation is of minor effect so far, this situation is likely to change. The next part presents the health care expenditures evolution in the Czech Republic from the beginning of the nineties. The data sources confirm that these expenditures keep growing just the same way as in other states in the world. The last part defines and quantifies the foreseen scenarios of the above mentioned health care expenditures depending upon demographic evolution. The results of those scenarios are being compared with other analysis results focusing on analyzing the influence of ageing process and health condition fluctuations on expenditure levels in the Czech Republic as well as in other EU countries. Keywords: population ageing, health care, costs of dying, health, new technologies, healthcare...

Hintergrund: Neue, individualisierte symptomatische und kausal orientierte Behandlungsmöglichkeiten haben in den vergangenen Jahren zu einer Veränderung der Krankheitsverläufe und der Langzeitprognose von seltenen neurologischen, zuvor im Kindes- oder Jugendalter lebenslimitierenden Erkrankungen geführt. Für diese Erkrankungen gibt es wenig standardisierte Behandlungsalgorithmen zur Rolle und Implementierung der spezialisierten Palliativversorgung. Die Muskeldystrophie Duchenne (DMD) gehört zu diesen seltenen, progredienten, lebenslimitierenden neuromuskulären Erkrankungen des Kindes-, Jugend- und zunehmend auch des jungen Erwachsenenalters, die in Deutschland ca. 1.500 Menschen betrifft. Palliativmedizinische Ansätze und Prinzipien sollen gemäß der Erklärung der ACT (Association for Children with Life-Threatening or Terminal Conditions and their Families) bei lebenslimitierenden Erkrankungen ab Diagnosestellung umgesetzt werden. Dies kann sowohl auf der allgemeinen als auch auf der spezialisierten (Palliativ)Versorgungsebene realisiert werden. Fragestellung: In der Studie wird die Palliativversorgung bei Patienten mit DMD und ihrer Familien in Deutschland hinsichtlich der Bedarfe und „unmet needs“, die gesundheitliche Situation und Symptome, die ambulante und stationäre Versorgung, die Einstellungen zu Sterben und Tod sowie die Wahrnehmung von Palliative Care analysiert. Ziel ist die Analyse der Ist-Situation und in Folge die Entwicklung eines kollaborativen integrierten Modells für die Palliativversorgung bei jungen Menschen mit einer lebenslimitierenden neurologischen Erkrankung. Material und Methoden: Ein trianguliertes Mixed-Methods-Design aus (1) qualitativen, (2) quantitativen und (3) versorgungsepidemiologischen Forschungsmethoden wurde umgesetzt. (ad 1) Semistrukturierte Interviews mit Patienten(-familien) wurden geführt und mit der qualitativen Inhaltsanalyse nach Mayring analysiert. (ad 2) Ein Online-Fragebogen an Patienten ab einem Alter von 10 Jahren und deren Familien wurde über das deutsche DMD-Patientenregister und die Universitätskliniken Dresden und Essen versandt. Die erhobenen Daten zur Soziodemografie, gesundheitlichen Situation und Symptomprävalenz, ambulanten und stationären Versorgung, Behandlungszufriedenheit, Kenntnis und Nutzung von Hospiz- und Palliativversorgungsstrukturen sowie die Einstellungen zu Sterben und Tod wurden deskriptiv und interferenzanalytisch untersucht. (ad 3) Die Krankenhausbehandlung der G71.0-Diagnosefälle (Muskeldystrophie) der Jahre 2005 bis 2015 wurde anhand von Mikrodaten der DRG-Statistik umfassend analysiert. Ergebnisse: Die qualitative Analyse der Interviews mit neun Patienten(-familien) (Mittelwert Patientenalter 20,8 Jahre) ergab Bedarfe hinsichtlich multiprofessioneller Beratung, der Antizipation des Krankheitsverlaufs, passender und verfügbarer Versorgungsstrukturen, der Transition in die Erwachsenenversorgung und des Anliegens, das Lebensende innerhalb der Familie oder mit Ärzten zu thematisieren. Die Stichprobe der quantitativen Analyse (Online-Fragebogen) umfasste 150 Patienten (Rücklaufquote 28 %; entspricht ca. 15 % der deutschen DMD-Patienten ab einem Alter von 10 Jahren; Mittelwert Patientenalter 19,8 Jahre; 13 % gehfähig, 23 % nicht mehr gehfähig bei erhaltener Arm- und Handfunktion, 64 % ohne Gehfähigkeit und Armfunktion; 79 % bei den Eltern lebend; 78 % ausschließlich durch die Familie versorgt). Die Patienten gaben folgende Symptome an: Schmerz (bei 57 % aller Patienten), Fatigue (43 %), Depression (30 %), Obstipation (25 %) und Dyspnoe (7 %). Zur Symptombehandlung machten die Patienten folgende Angaben: Schmerz 71 % ohne bzw. ohne zufriedenstellende Behandlung, Fatigue 84 %, Depression 73 %, Obstipation 56 %, Dyspnoe 40 %. Die medizinischen Primärversorger waren vorrangig Pädiater (45 %) und Allgemeinmediziner (37 %). Bis zum 18. Lebensjahr erfolgte in 92 % der Fälle eine multiprofessionelle Versorgung, ab dem 18. Lebensjahr nur zu 45 %. Die multiprofessionelle Versorgung hatte keinen signifikanten Einfluss auf die Symptomprävalenz oder Frequenz der Krankenhausaufnahmen. Probleme im Transitionsprozess wurden in den Interviews der qualitativen Phase der Studie formuliert und waren auch in der quantitativen Studienphase sowohl für den ambulanten Bereich (Online-Befragung: Weiterversorgung von 26 % der Erwachsenen durch Pädiater) als auch die stationäre Versorgung (DRG-Statistik: Behandlung von 22 % der 20-24-jährigen Patienten in pädiatrischen Fachabteilungen) nachweisbar. In der stationären Versorgung erfolgte laut Online-Befragung (55 % der Patienten mit elektiven und 32 % mit akuten Krankenhausaufenthalten in den zwei Jahren vor dem Befragungszeitpunkt) und der Analyse der DRG-Statistik (2005-2015: pro Jahr ca. 2.100 Krankenhausaufenthalte von Patienten mit Muskeldystrophie [MD] als Haupt- oder Nebendiagnose im Alter von 0-34 Jahren) ein wesentlicher Teil der (Palliativ-)Versorgung. Laut DRG-Statistik gab es die meisten Krankenhausaufenthalte in der Gruppe der 10-19-jährigen; jedoch ist bei den jungen Erwachsenen (20-34 Jahre) ein besonders starker Zuwachs der Zahl der Krankenhausaufnahmen (74 %) zu verzeichnen. Geplante Krankenhauseinweisungen (70 % der Aufnahmen) erfolgten v. a. in den Fachabteilungen Pädiatrie (40 %), Pneumologie (17 %) und Innere Medizin ohne Pneumologie (13 %). Notfälle (30 % der Aufnahmen, Anstieg zwischen 2006 und 2015 über alle Altersgruppen hinweg um 44 %) wurden vorrangig in der Pädiatrie (49 %), Inneren Medizin (20 %) und Chirurgie/Orthopädie (13 %) behandelt. Lediglich 30 % der Krankenhausaufenthalte resultierten aus der Diagnose „Muskeldystrophie“ an sich, bei 70 % lagen andere Hauptdiagnosen (Komplikationen der Muskeldystrophie, Begleiterkrankungen) zugrunde. Die Verweildauer der Patienten lag im Mittel bei 5,5 Tagen; 55 % waren Kurzlieger mit einer Verweildauer von maximal drei Tagen. Pro Jahr verstarben ca. 35 MD-Patienten im Krankenhaus, häufig nach Notfalleinweisungen und v. a. in den Fachabteilungen Innere Medizin (36 %) und Pädiatrie (28 %). Ein Viertel der stationär verstorbenen Patienten war zwischen 15 und 19 Jahre alt, die Hälfte 20 -24 Jahre und ein Drittel 25 - 34 Jahre. Strukturen der Hospiz- und Palliativversorgung waren 70 % aller Online-Befragten bekannt und wurden von 18 % genutzt. Laut DRG-Statistik fanden 6 % aller Krankenhausaufenthalte der MD-Patienten auf Palliativstationen statt, fast ausschließlich bei Patienten mit onkologischen Begleiterkrankungen. Patienten als auch Eltern fühlten sich sehr gut zum Krankheitsverlauf informiert, bei anstehenden Entscheidungsprozessen eingebunden und empfanden die zur Verfügung gestellte Zeit der Behandelnden als ausreichend. Kritischer wurde die erhaltene emotionale Unterstützung bewertet. Die Themen Sterben und Tod wurden in der Arzt-Patienten-Kommunikation selten besprochen. Der Wunsch, Behandlungsentscheidungen im Voraus zu treffen, hatte eine hohe Bedeutung und nahm mit steigendem Lebensalter zu. Internet und soziale Medien wurden zur Krankheitsverarbeitung und -bewältigung zurückhaltend genutzt. Schlussfolgerungen: Die triangulierte Datenanalyse ergibt „unmet needs“ im Symptommanagement, den Notfalleinweisungen in Krankenhäuser, der überwiegenden Pflege durch die Eltern ohne externe Unterstützung, der Transition sowie der ärztlichen Kommunikation über Sterben und Tod. Kompetenzen von Palliativversorgern liegen in den Themenfeldern multiprofessionelle Symptomkontrolle und -behandlung, aufsuchende Koordination, Beratung, Krisenintervention, Unterstützung im stationären Bereich, Kommunikation zur vorausschauenden Planung (Advance Care Planning) und zu Sterben und Tod sowie Versorgung am Lebensende. Komplexe, schwer behandelbare, belastende Symptome trotz optimaler Therapie durch Haus- und Fachärzte, komplexe Versorgungssituationen mit (drohender) Überlastung der Angehörigen oder mit erforderlichem hohen koordinativen Aufwand, Häufung von Krankenhausaufenthalten sowie komplexe stationäre Behandlungssituationen, der Wunsch nach Therapiezielgesprächen oder das Lebensende bieten Schnittstellen für den Einbezug spezialisierter Palliativversorger. Aus der Datenanalyse wurde ein kollaboratives integriertes Modell für die Palliativversorgung bei jungen Menschen mit einer lebenslimitierenden neurologischen Erkrankung entwickelt. Es wurden Schnittstellen und Grenzen der jeweiligen Versorgungsebenen definiert. Demnach können Primärversorger durch spezialisierte Palliativversorger ergänzt werden, um die bestmögliche Lebensqualität von Menschen mit einer DMD umfassend und orientiert an deren Wünschen und Bedürfnissen zu sichern.:1. EINLEITUNG 12 1.1. Die Muskeldystrophie Duchenne 12 1.1.1. Prävalenz 12 1.1.2. Der klinische Verlauf der Muskeldystrophe Duchenne 13 1.1.3. Versorgungssituation von Patienten mit Muskeldystrophie Duchenne in Deutschland 16 1.2. Palliativversorgung bei der Muskeldystrophie Duchenne 19 1.2.1. Definition 19 1.2.2. Grundlagen 20 1.2.3. Strukturen 21 1.2.4. Empfehlungen 26 1.2.5. Forschungsstand 28 1.3. Versorgungsforschung 33 1.3.1. Teilgebiet der Gesundheitssystemforschung 33 1.3.2. Versorgungsforschung bei Patienten mit einer Muskeldystrophie Duchenne 35 2. ZIELSTELLUNG 37 3. METHODIK 39 3.1. Ethikvotum 40 3.2. Qualitative Forschung 40 3.2.1. Interviews 40 3.2.2. Kohorte 41 3.3. Quantitative Forschung 42 3.3.1. Online-Befragung 42 3.3.2. Kohorte 43 3.4. Versorgungsepidemiologische Forschung 43 3.4.1. Analyse der DRG-Statistik 43 3.4.2. Kohorte 44 4. ERGEBNISSE 47 4.1. Ergebnisse der qualitativen Forschung 47 4.1.1. Soziodemografische Daten und Versorgungssituation 47 4.1.2. Themen und Problemfelder aus Patienten- und Elternsicht 48 4.1.2.1. Bedürfnis nach multiprofessioneller Behandlung 48 4.1.2.2. Antizipation des Krankheitsverlaufs 48 4.1.2.3. Bedürfnis nach passenden und verfügbaren Versorgungsstrukturen 49 4.1.2.4. Umsetzung der Transition 49 4.1.2.5. Wahrnehmung von Palliativ- und Hospizversorgung 50 4.2. Ergebnisse der quantitativen Forschung 56 4.2.1. Kohorte 56 4.2.2. Soziodemografische Daten 57 4.2.2.1. Altersverteilung 57 4.2.2.2. Regionale Verteilung der Wohnorte 57 4.2.2.3. Lebensort 59 4.2.2.4. Pflegerische Versorgung 60 4.2.2.5. Bildungs- und Beschäftigungssituation 61 4.2.2.6. Zusammenfassung 63 4.2.3. Krankheitsstadien und Atemhilfen 64 4.2.4. Symptomprävalenz und -behandlung 65 4.2.4.1. Schmerz 67 4.2.4.2. Fatigue 68 4.2.4.3. Depression 69 4.2.4.4. Obstipation 70 4.2.4.5. Dyspnoe 70 4.2.4.6. Symptombehandlung aus Patientenperspektive 71 4.2.4.7. Zusammenfassung 72 4.2.5. Die ambulante Versorgung 73 4.2.5.1. Die hausärztliche Versorgung 73 4.2.5.2. Die interdisziplinäre und multiprofessionelle Versorgung 74 4.2.5.3. Zusammenfassung 76 4.2.6. Die stationäre Versorgung 77 4.2.6.1. Elektive Krankenhausaufenthalte 77 4.2.6.2. Akute Krankenhausaufenthalte 79 4.2.6.3. Zusammenfassung 82 4.2.7. Einflussfaktoren und Auswirkungen multiprofessioneller Versorgung 83 4.2.7.1. Alter 83 4.2.7.2. Allgemeine ärztliche Versorgung 84 4.2.7.3. Bundesländerspezifische Unterschiede 84 4.2.7.4. Lebensort 85 4.2.7.5. Symptomprävalenz und -behandlung 86 4.2.7.6. Elektive und akute Krankenhausaufenthalte 87 4.2.7.7. Zusammenfassung 90 4.2.8. Palliativversorgung 92 4.2.8.1. Kenntnis und Inanspruchnahme von Strukturen der Palliativversorgung 92 4.2.8.2. Ansprechpartner in gesundheitlichen Krisen 93 4.2.8.3. Haltung zu palliativen Themenfeldern 94 4.2.8.4. Zusammenfassung 96 4.3. Versorgungsepidemiologische Analyse der G71.0-Diagnosefälle der DRG-Statistik der Jahre 2005-2015 97 4.3.1. Kohorte 97 4.3.1.1. Gesamtzahlen 97 4.3.1.2. Altersgruppen 98 4.3.2. Patientenwohnorte und Krankenhausstandorte 100 4.3.2.1. Wohnorte der Patienten 101 4.3.2.2. Krankenhausstandorte 102 4.3.3. Aufnahmeanlässe und Aufnahmegründe 104 4.3.3.1. Aufnahmeanlässe 104 4.3.3.2. Aufnahmegrund 105 4.3.4. Notfalleinweisungen 106 4.3.4.1. Altersgruppen bei Notfalleinweisungen 106 4.3.4.2. Fachabteilungen bei Notfalleinweisungen 108 4.3.5. Komorbiditäten 110 4.3.5.1. Aufnahmebegründende Diagnosen 110 4.3.5.2. Altersverteilung bei den Hauptdiagnosen Muskeldystrophie und respiratorische Insuffizienz 114 4.3.6. Fachabteilungen 115 4.3.6.1. Fachabteilungen mit längster Verweildauer 115 4.3.6.2. Erwachsene Patienten in pädiatrischen Fachabteilungen 117 4.3.7. Verweildauer 118 4.3.7.1. Verweildauer nach Altersgruppen 118 4.3.7.2. Verweildauern bei elektiven Aufnahmen und Notfalleinweisungen 120 4.3.7.3. Verweildauer bei den Hauptdiagnosen Muskeldystrophie und respiratorische Insuffizienz 121 4.3.8. Entlassungsgründe 123 4.3.9. Stationäre Behandlung auf Palliativstationen 123 4.3.10. Versterben im Krankenhaus 125 4.3.11. Zusammenfassung 126 5. DISKUSSION 128 5.1. Die Versorgungssituation junger Menschen mit Muskeldystrophie Duchenne in Deutschland – eine Populationsperspektive 128 5.1.1. Soziodemografie: Alter, Wohn- und Lebensort, Pflege und Beschäftigungssituation 128 5.1.2. Stadien der Erkrankung 132 5.2. Die Versorgungssituation von jungen Menschen mit Muskeldystrophie Duchenne in Deutschland aus medizinischer Perspektive 134 5.2.1. Symptomprävalenz und -behandlung 134 5.2.2. Ambulante multiprofessionelle Versorgung 138 5.2.3. Stationäre Versorgung 140 5.3. Die Versorgungssituation von Menschen mit Muskeldystrophie Duchenne in Deutschland aus der Perspektive der Palliativversorgung 143 5.3.1. Inanspruchnahme von Strukturen der Palliativversorgung 144 5.3.2. Problemstellungen und Unzulänglichkeiten in der Versorgung 146 5.3.2.1. Symptommanagement 147 5.3.2.2. Familiäre Belastung 148 5.3.2.3. Transition 149 5.3.2.4. Emotionale Unterstützung und Kommunikation zu Sterben und Tod 151 5.4. Entwicklung des Modells einer kollaborativen integrierten Palliativversorgung für junge Menschen mit einer lebenslimitierenden neurologischen Erkrankung am Beispiel der Muskeldystrophie Duchenne 153 5.4.1. Themenfeld 1: Symptommanagement 155 5.4.2. Themenfeld 2: Krisenintervention 156 5.4.3. Themenfeld 3: Familiäre Entlastung 157 5.4.4. Themenfeld 4: Koordination 158 5.4.5. Themenfeld 5: Unterstützung bei Krankenhausaufenthalten 159 5.4.6. Themenfeld 6: Advance Care Planning 160 5.4.7. Themenfeld 7: Versorgung am Lebensende 161 5.5. Diskussion des Mixed-Methods-Ansatzes im Kontext der Versorgungsforschung 163 5.5.1. Diskussion des qualitativen Forschungsdesigns 163 5.5.2. Diskussion des quantitativen Forschungsdesigns 164 5.5.3. Diskussion des versorgungsepidemiologischen Analysedesigns 166 5.6. Limitationen der Studie 168 5.6.1. Stichprobenumfang und Repräsentativität 168 5.6.2. Methodik 168 5.7. Ausblick und weitere Forschungsfragen 169 6. ZUSAMMENFASSUNG 171 7. SUMMARY 174 8. LITERATURVERZEICHNIS 177 9. ANHANG 193 / Background: In recent years, new, individualized symptomatic and causally oriented treatment options have led to a change in the course and long-term prognosis of rare neurological diseases that were previously life-limiting in childhood or adolescence. To date, there are few standardized treatment algorithms for the role and implementation of specialized palliative care. (DMD) is one of these rare, progressive, life-limiting neuromuscular diseases of childhood, adolescence, and increasingly young adulthood, affecting approximately 1,500 people in Germany. According to the statement of the ACT (Association for Children with Life-Threatening or Terminal Conditions and their Families), palliative care approaches and principles in life-limiting diseases should be implemented beginning with the moment of diagnosis. This can be put into practice on the general as well as on the specialized (palliative) care level. Research question: The study analyzes palliative care in DMD patients and their families in Germany with regard to needs and unmet needs, health situation and symptoms, outpatient and inpatient care, attitudes toward dying and death, and perceptions of palliative care. The aim is to analyze the current situation and subsequently develop a collaborative integrated model for palliative care in young people with a life-limiting neurological disease. Materials and methods: A mixed-methods design of (1) qualitative, (2) quantitative, and (3) care epidemiological research methods was used. (ad 1) Semi-structured interviews with patients (and their families) were conducted and analyzed using Mayring's qualitative content analysis. (ad 2) An online questionnaire for patients aged 10 years and older and their families was distributed via the German DMD patient registry and the university hospitals of Dresden and Essen. Data collected on socio-demographics, health situation and symptom prevalence, outpatient and inpatient care, treatment satisfaction, knowledge and use of hospice and palliative care structures, and attitudes toward dying and death were analyzed descriptively and by interference analysis. (ad 3) Hospital treatment of G71.0 diagnosis cases (muscular dystrophy) from 2005 to 2015 was comprehensively analyzed using microdata from DRG statistics. Results: The qualitative analysis of the interviews with nine patients (and their families) (mean patient age 20.8 years) revealed needs regarding multi-professional counseling, anticipation of the course of the disease, appropriate and available care structures, transition to adult care, and the desire to talk about the end of life with the family or with physicians. The sample of the quantitative analysis (online questionnaire) included 150 patients (response rate 28%; corresponding to approximately 15% of German DMD patients aged 10 years and older; mean patient age 19.8 years; 13% ambulatory, 23% no longer ambulatory with preserved arm and hand function, 64% without ambulation and arm function; 79% living with parents; 78% cared for exclusively by family). Patients reported the following symptoms: Pain (in 57% of all patients), fatigue (43%), depression (30%), constipation (25%), and dyspnea (7%). Regarding symptom management, patients provided the following information: pain 71% with no or no satisfactory treatment, fatigue 84%, depression 73%, constipation 56%, dyspnea 40%. Primary medical care providers were primarily pediatricians (45%) and general practitioners (37%). Multi-professional care was provided in 92% of cases up to the age of 18, and in only 45% of cases after the age of 18. Multi-professional care had no significant effect on symptom prevalence or frequency of hospital admissions. Problems in the transition process were voiced in the interviews of the qualitative phase of the study and were detectable in the quantitative study phase both in the outpatient setting (online survey: continuing care of 26% of adults by pediatricians) and in inpatient care (DRG statistics: treatment of 22% of 20-24-year-old patients in pediatric departments). Inpatient care provided a substantial amount of (palliative) care according to the online survey (55% of patients with elective and 32% with acute hospitalizations in the 2 years prior to the survey date) and analysis of DRG statistics (2005-2015: approximately 2,100 hospitalizations per year of patients with muscular dystrophy [MD] as a principal or secondary diagnosis aged 0-34 years). According to DRG statistics, most hospitalizations occurred in the 10-19 year old group; however, young adults (20-34 years) experienced a particularly large increase in the number of hospitalizations (74%). Planned hospitalizations (70% of admissions) occurred primarily in the departments of pediatrics (40%), pulmonology (17%), and internal medicine excluding pulmonology (13%). Emergency cases (30 % of admissions, increase of 44 % between 2006 and 2015 across all age groups) were primarily treated in pediatrics (49 %), internal medicine (20 %), and surgery/orthopedics (13 %). Only 30% of hospitalizations resulted from the diagnosis of muscular dystrophy per se; 70% were due to other main diagnoses (complications of muscular dystrophy, concomitant diseases). The average length of stay of the patients was 5.5 days; 55 % were short-stay patients with a maximum length of stay of three days. Approximately 35 MD patients died in the hospital each year, often after emergency admissions and primarily in the departments of internal medicine (36%) and pediatrics (28%). One quarter of the inpatients who died were between 15 and 19 years of age, half of them 20-24 years, and one 25-34 years. Hospice and palliative care structures were known to 70% of all online respondents and used by 18%. According to DRG statistics, 6% of all hospitalizations of MD patients took place in palliative care units, almost exclusively for patients with oncological comorbidities. Patients as well as parents felt very well informed about the course of the disease, involved in upcoming decision-making processes, and felt that the time provided by the treating staff was sufficient. The emotional support received was evaluated more critically. The topics of dying and death were rarely discussed in doctor-patient communication. The desire to make treatment decisions in advance had high importance and increased with advancing age. Internet and social media were used with restraint for illness management and coping. Conclusions: Triangulated data analysis shows unmet needs in symptom management, emergency hospitalizations, predominant care by parents without external support, transition and physician communication about dying and death. Competencies of palliative care providers are in the fields of multi-professional symptom control and treatment, outreach coordination, counseling, crisis intervention, inpatient support, advance care planning communication, and dying and death and end-of-life care. Complex, difficult-to-treat, distressing symptoms despite optimal therapy by primary care physicians and specialists, complex care situations with (threatening) overload of relatives or with required high coordinative effort, accumulation of hospitalizations as well as complex inpatient treatment situations, the desire for therapy goal discussions or the end of life offer interfaces for the involvement of specialized palliative care providers. Based on the data analysis, a collaborative integrated model for palliative care of young people with life-limiting neurological disease was developed. Interfaces and limits of the respective care levels were defined. According to this model, primary care providers can be complemented by specialized palliative care providers to comprehensively ensure the best possible quality of life for people with a DMD based on their wishes and needs.:1. EINLEITUNG 12 1.1. Die Muskeldystrophie Duchenne 12 1.1.1. Prävalenz 12 1.1.2. Der klinische Verlauf der Muskeldystrophe Duchenne 13 1.1.3. Versorgungssituation von Patienten mit Muskeldystrophie Duchenne in Deutschland 16 1.2. Palliativversorgung bei der Muskeldystrophie Duchenne 19 1.2.1. Definition 19 1.2.2. Grundlagen 20 1.2.3. Strukturen 21 1.2.4. Empfehlungen 26 1.2.5. Forschungsstand 28 1.3. Versorgungsforschung 33 1.3.1. Teilgebiet der Gesundheitssystemforschung 33 1.3.2. Versorgungsforschung bei Patienten mit einer Muskeldystrophie Duchenne 35 2. ZIELSTELLUNG 37 3. METHODIK 39 3.1. Ethikvotum 40 3.2. Qualitative Forschung 40 3.2.1. Interviews 40 3.2.2. Kohorte 41 3.3. Quantitative Forschung 42 3.3.1. Online-Befragung 42 3.3.2. Kohorte 43 3.4. Versorgungsepidemiologische Forschung 43 3.4.1. Analyse der DRG-Statistik 43 3.4.2. Kohorte 44 4. ERGEBNISSE 47 4.1. Ergebnisse der qualitativen Forschung 47 4.1.1. Soziodemografische Daten und Versorgungssituation 47 4.1.2. Themen und Problemfelder aus Patienten- und Elternsicht 48 4.1.2.1. Bedürfnis nach multiprofessioneller Behandlung 48 4.1.2.2. Antizipation des Krankheitsverlaufs 48 4.1.2.3. Bedürfnis nach passenden und verfügbaren Versorgungsstrukturen 49 4.1.2.4. Umsetzung der Transition 49 4.1.2.5. Wahrnehmung von Palliativ- und Hospizversorgung 50 4.2. Ergebnisse der quantitativen Forschung 56 4.2.1. Kohorte 56 4.2.2. Soziodemografische Daten 57 4.2.2.1. Altersverteilung 57 4.2.2.2. Regionale Verteilung der Wohnorte 57 4.2.2.3. Lebensort 59 4.2.2.4. Pflegerische Versorgung 60 4.2.2.5. Bildungs- und Beschäftigungssituation 61 4.2.2.6. Zusammenfassung 63 4.2.3. Krankheitsstadien und Atemhilfen 64 4.2.4. Symptomprävalenz und -behandlung 65 4.2.4.1. Schmerz 67 4.2.4.2. Fatigue 68 4.2.4.3. Depression 69 4.2.4.4. Obstipation 70 4.2.4.5. Dyspnoe 70 4.2.4.6. Symptombehandlung aus Patientenperspektive 71 4.2.4.7. Zusammenfassung 72 4.2.5. Die ambulante Versorgung 73 4.2.5.1. Die hausärztliche Versorgung 73 4.2.5.2. Die interdisziplinäre und multiprofessionelle Versorgung 74 4.2.5.3. Zusammenfassung 76 4.2.6. Die stationäre Versorgung 77 4.2.6.1. Elektive Krankenhausaufenthalte 77 4.2.6.2. Akute Krankenhausaufenthalte 79 4.2.6.3. Zusammenfassung 82 4.2.7. Einflussfaktoren und Auswirkungen multiprofessioneller Versorgung 83 4.2.7.1. Alter 83 4.2.7.2. Allgemeine ärztliche Versorgung 84 4.2.7.3. Bundesländerspezifische Unterschiede 84 4.2.7.4. Lebensort 85 4.2.7.5. Symptomprävalenz und -behandlung 86 4.2.7.6. Elektive und akute Krankenhausaufenthalte 87 4.2.7.7. Zusammenfassung 90 4.2.8. Palliativversorgung 92 4.2.8.1. Kenntnis und Inanspruchnahme von Strukturen der Palliativversorgung 92 4.2.8.2. Ansprechpartner in gesundheitlichen Krisen 93 4.2.8.3. Haltung zu palliativen Themenfeldern 94 4.2.8.4. Zusammenfassung 96 4.3. Versorgungsepidemiologische Analyse der G71.0-Diagnosefälle der DRG-Statistik der Jahre 2005-2015 97 4.3.1. Kohorte 97 4.3.1.1. Gesamtzahlen 97 4.3.1.2. Altersgruppen 98 4.3.2. Patientenwohnorte und Krankenhausstandorte 100 4.3.2.1. Wohnorte der Patienten 101 4.3.2.2. Krankenhausstandorte 102 4.3.3. Aufnahmeanlässe und Aufnahmegründe 104 4.3.3.1. Aufnahmeanlässe 104 4.3.3.2. Aufnahmegrund 105 4.3.4. Notfalleinweisungen 106 4.3.4.1. Altersgruppen bei Notfalleinweisungen 106 4.3.4.2. Fachabteilungen bei Notfalleinweisungen 108 4.3.5. Komorbiditäten 110 4.3.5.1. Aufnahmebegründende Diagnosen 110 4.3.5.2. Altersverteilung bei den Hauptdiagnosen Muskeldystrophie und respiratorische Insuffizienz 114 4.3.6. Fachabteilungen 115 4.3.6.1. Fachabteilungen mit längster Verweildauer 115 4.3.6.2. Erwachsene Patienten in pädiatrischen Fachabteilungen 117 4.3.7. Verweildauer 118 4.3.7.1. Verweildauer nach Altersgruppen 118 4.3.7.2. Verweildauern bei elektiven Aufnahmen und Notfalleinweisungen 120 4.3.7.3. Verweildauer bei den Hauptdiagnosen Muskeldystrophie und respiratorische Insuffizienz 121 4.3.8. Entlassungsgründe 123 4.3.9. Stationäre Behandlung auf Palliativstationen 123 4.3.10. Versterben im Krankenhaus 125 4.3.11. Zusammenfassung 126 5. DISKUSSION 128 5.1. Die Versorgungssituation junger Menschen mit Muskeldystrophie Duchenne in Deutschland – eine Populationsperspektive 128 5.1.1. Soziodemografie: Alter, Wohn- und Lebensort, Pflege und Beschäftigungssituation 128 5.1.2. Stadien der Erkrankung 132 5.2. Die Versorgungssituation von jungen Menschen mit Muskeldystrophie Duchenne in Deutschland aus medizinischer Perspektive 134 5.2.1. Symptomprävalenz und -behandlung 134 5.2.2. Ambulante multiprofessionelle Versorgung 138 5.2.3. Stationäre Versorgung 140 5.3. Die Versorgungssituation von Menschen mit Muskeldystrophie Duchenne in Deutschland aus der Perspektive der Palliativversorgung 143 5.3.1. Inanspruchnahme von Strukturen der Palliativversorgung 144 5.3.2. Problemstellungen und Unzulänglichkeiten in der Versorgung 146 5.3.2.1. Symptommanagement 147 5.3.2.2. Familiäre Belastung 148 5.3.2.3. Transition 149 5.3.2.4. Emotionale Unterstützung und Kommunikation zu Sterben und Tod 151 5.4. Entwicklung des Modells einer kollaborativen integrierten Palliativversorgung für junge Menschen mit einer lebenslimitierenden neurologischen Erkrankung am Beispiel der Muskeldystrophie Duchenne 153 5.4.1. Themenfeld 1: Symptommanagement 155 5.4.2. Themenfeld 2: Krisenintervention 156 5.4.3. Themenfeld 3: Familiäre Entlastung 157 5.4.4. Themenfeld 4: Koordination 158 5.4.5. Themenfeld 5: Unterstützung bei Krankenhausaufenthalten 159 5.4.6. Themenfeld 6: Advance Care Planning 160 5.4.7. Themenfeld 7: Versorgung am Lebensende 161 5.5. Diskussion des Mixed-Methods-Ansatzes im Kontext der Versorgungsforschung 163 5.5.1. Diskussion des qualitativen Forschungsdesigns 163 5.5.2. Diskussion des quantitativen Forschungsdesigns 164 5.5.3. Diskussion des versorgungsepidemiologischen Analysedesigns 166 5.6. Limitationen der Studie 168 5.6.1. Stichprobenumfang und Repräsentativität 168 5.6.2. Methodik 168 5.7. Ausblick und weitere Forschungsfragen 169 6. ZUSAMMENFASSUNG 171 7. SUMMARY 174 8. LITERATURVERZEICHNIS 177 9. ANHANG 193

Diploma thesis "Health care system development from the perspective of citizens" deals with the current state of Czech healthcare system, how is perceived by the citizens who are the target population of health policy and the main goal of health system is to improve their health. The main goal of this thesis is to find out, if the current state of Czech healthcare system meets with the requirements of citizens, having regard to the citizen's information and compared with the expectations. Qualitative and quantitative research methods (questionnaire, expert and semi structured interviews) were used to achieve the objectives. Theoretical and empirical part of the thesis is focused on the wider context of the role of citizens in the society and enforcement and respect of their human rights. There is emphasized the participation of citizens on health policy and importance of the human rights related to health in the thesis. Results of the survey show the lack of awareness of the human rights related to health and of news in healthcare that does not allow effective participation on creation and implementation of health policy and fulfillment of the role and responsibilities of the state in enforcement of the public interest. One of the biggest weaknesses of citizens is the lack of knowledge about the...

This Ph.D. thesis discusses the evolution and current situation regarding availability of healthcare for third countries migrants in the Czech Republic. In terms of methodology, the author has chosen a qualitative approach. The research design is a historical case study. The thesis uses a combination of "desk research" and empirical survey based on 56 in-depth interviews with migrants, healthcare providers and experts who come into contact with migrants during the course of their work. Based on the approach of historical institutionalism, the author is explaining policy of migrants' health insurance evolution in Czech Republic since 1993 till today. The author identifies the key events and the roles of particular actors within the observed "sub- system" of public policy. From the viewpoint of migrants and healthcare providers, the thesis also presents how the current institutionalised set-up of migrants' health policy transfers into the real access to healthcare for migrants. It also identifies the main barriers to health care accessibility and the consequences of possible health care unavailability. Key words: migrants, health care availability, health insurance, historical institutionalism, barriers to health care access