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Two broad themes of this research are, 1) to develop a generalized framework for studying the process of patient information acquisition and 2) to develop and evaluate automated techniques for identifying domain-specific vocabulary terms contained in, or missing from, a standardized controlled medical vocabulary with emphasis on those terms necessary for representing the canine physical examination. A generalized framework for studying the process of patient information acquisition is addressed by the Patient Information Acquisition Model (PIAM). PIAM illustrates the decision-to-perception chain which links a clinician's decision to collect information, either personally or through another, with the perception of the resulting information. PIAM serves as a framework for a systematic approach to identifying causes of missing or inaccurate information. The vocabulary studies in this research were conducted using free-text with two objectives in mind, 1) develop and evaluate automated techniques for identifying canine physical examination terms contained in the Systematized Nomenclature of Medicine and Veterinary Medicine (SNOMED), version 3.3 and 2) develop and evaluate automated techniques for identifying canine physical examination terms not documented in the 1997 release of the Unified Medical Language System (UMLS). Two lexical matching techniques for identifying SNOMED concepts contained in free-text were evaluated, 1) lexical matching using SNOMED version 3.3 terms alone and 2) Metathesaurus-enhanced lexical matching. Metathesaurus-enhanced lexical matching utilized non-SNOMED terms from the source vocabularies of the Metathesaurus of the Unified Medical Language System to identify SNOMED concepts in free-text using links among synonymous terms contained in the Metathesaurus. Explicit synonym disagreement between the Metathesaurus and its source vocabularies was identified during the Metathesaurus-enhanced lexical matching studies. Explicit synonym disagreement occurs, 1) when terms within a single concept group in a source vocabulary are mapped to multiple Metathesaurus concepts, and 2) when terms from multiple concept groups in a source vocabulary are mapped to a single Metathesaurus concept. Five causes of explicit synonym disagreement between a source vocabulary and the Metathesaurus were identified in this research, 1) errors within a source vocabulary, 2) errors within the Metathesaurus, 3) errors in mapping between the Metathesaurus and a source vocabulary, 4) systematic differences in vocabulary management between the Metathesaurus and a source vocabulary, and 5) differences regarding synonymy among domain experts, based on perspective or context. Three approaches to reconciling differences among domain experts are proposed. First, document which terms are involved. Second, provide a mechanism for selecting either vocabulary-based or Metathesaurus-based synonymy. Third, assign a "basis of synonymy" attribute to each set of synonymous terms in order to identify the perspective or context of synonymy explicitly. The second objective, identifying canine physical examination terms not documented in the 1997 release of the UMLS was accomplished using lexical matching, domain-specific free-text, the Metathesaurus and the SPECIALIST Lexicon. Terms contained in the Metathesaurus and SPECIALIST Lexicon were removed from free-text and the remaining character strings were presented to domain experts along with the original sections of text for manual review. / Ph. D.

Information and communication technologies can be used to deliver healthcare services and improve the healthcare system. Any electronic healthcare system whose usage results in the efficient and enhanced quality of healthcare is an eHealth system and can be beneficial for medical enterprises. Despite the advantages that eHealth systems offer, medical enterprises are often reluctant to abandon their paper-based systems and embrace eHealth solutions. Through a review of existing eHealth literature, this study identified generic technologies used within South African medical enterprises. Fourteen (14) technologies, that represent a basket of eHealth systems for supporting the business management, professional clinical informatics, patient information storage and consumer health informatics functional areas, were identified. The study then aimed to determine the state of adoption of these technologies as well as the factors influencing adoption. The technological, organisational and environmental (TOE) factors that contributed to the current state of adoption were identified through a review of existing TOE literature. A model that explores the effects of these pre-determined TOE factors on the propensity to adopt eHealth was developed and tested. A cross-sectional, quantitative study was carried out and survey data was collected from a sample of 130 medical enterprises in South Africa. Data was collected using a structured questionnaire. Correlation analysis was used to test the model’s hypotheses and hierarchical regression was used to test the overall TOE model. By using the TOE framework, the study has provided a theoretical contribution and addressed a gap in the literature into the barriers and determinants of the adoption of information and communication technologies (ICTs) in healthcare. The results of the study show that South African medical enterprises use systems that range from simple electronic fund transfer systems to more complex electronic record and clinical decision support systems. Of the 14 technologies that were identified, business information systems such as medical aid claims submission systems and electronic record systems for patient and fee related information were the most adopted while a steady, but continued increase in the adoption of clinical health information systems was observed. Specifically, the study reveals that electronic fund transfer systems are the most adopted systems while ePrescription systems are the least used. Furthermore, the study shows that in addition to the enterprises’ operating period, perceived benefits, IT infrastructure, senior clinician involvement, resource commitment and external pressure are correlated with the propensity to adopt while system complexity is a barrier to technology adoption.

Angesichts der wachsenden Zahl an Patienten, die sich im Internet über medizinische Fragen informieren, untersuchten wir Informationen auf Webseiten zum Down-Syndrom. Im Anschluss an eine Suche nach "Down-Syndrom" mit den Suchmaschinen Altavista und Yahoo (in deutsch und in englisch), untersuchten wir medizinische und psychosoziale Informationen auf den ersten 100 Suchergebnissen, die jede Suchmaschine ergab. Ein vordefinierter Katalog an gesundheitsbezogenen Daten wurde zur Beurteilung der Webseiten verwendet. Grundlegende (geforderte) und zusätzliche (fakultative) Informationen wurde getrennt ausgewertet. Deutsch- und englischsprachige Webseiten wurden miteinander verglichen. Die Stichprobengröße betrug 324 Suchergebnisse (200 englische, 124 deutsche), von denen nur 77 (24%) medizinische Webseiten waren. Unter ihnen befanden sich 34 relevante deutschsprachige Webseiten (27% von 124 Treffern) und 43 relevante englischsprachige Webseiten (22% von 200 Treffern). In beiden Sprachen wurden sämtliche Informationsgrade (von schlecht bis hervorragend) gefunden. Nur 24% der deutschsprachigen Webseiten und 35% der englischsprachigen Webseiten enthielten mehr als 50% der grundlegenden medizinischen Informationen. Bei den zusätzlichen Informationen gab es nur eine deutschsprachige und fünf englischsprachige Webseiten, die mehr als 50% des erwarteten Inhalts enthielten. Ein Einfluss der Sprache und des Verfassers (von Universitäten bis hin zu privaten Homepages) auf den Inhalt konnte festgestellt werden. Englische Webseiten enthielten mehr Material als deutschsprachige. Da viele Homepages die meisten der geforderten Fakten weder behandelten noch dafür bestimmt waren, dies zu tun, ist der Nutzen sowohl der deutschsprachigen als auch der englischsprachigen Webseiten als Informationsquelle über das DS eingeschränkt. Sorgfältige Anstrengungen sind erforderlich um zu gewährleisten, dass das Internet eine Gestalt annimmt, in der den Bedürfnisse der Nutzer bezüglich Gesundheitsinformationen Rechnung getragen wird. Allerdings zeigen einige Beispiele auch das Potential des Internets, auch wenn die Möglichkeiten, über das DS zu informieren, nicht voll ausgeschöpft werden. / Considering the increasing number of people using the internet as an source of knowledge about medical issues, we analysed the information of websites on Down Syndrome (DS). After a search for "Down syndrome" with the search engines Altavista and Yahoo (in German and in English), we examined medical and/or psycho-social information of web-sites within the first 100 hits yielded by each search engine. A predefined catalogue of health related data was used for ranking of web-sites. Basic (required) and additional (facultative) information were evaluated separately.English and German web-sites were compared. The sample size was 324 hits (200 English, 124 German) of which only 77 (24%) were medical web-sites. Among these were 34 relevant German web-sites (27% of 124 hits) and 43 relevant English web-sites (22% of 200 hits). In both languages all levels of information (poor/excellent) were found. Only 24% of the German web-sites and 35% of the English web-sites gave more than 50% of the basic medical information. Looking at the additional information, there were 1 German and 5 English web-sites communicating more than 50% of the expected content. An impact of language and authorship (universities/personal homepage) on the substance could be established. English websites contained more material than Germans. Since many homepages don`t cover and are not intended to present most of the required facts, the usefullness of both German and English web-sites as a source of information on DS is limited. Careful work is essential to ensure that the Internet takes shape in ways that support customers needs of health information. However, some examples show the potential of the Internet, although the possibilities to educate people about DS are not completly realised.

Patient-centred care has become an important model for health-care delivery, especially in cancer care. The implementation of this model includes patient-centred communication between the clinician and his or her patient. However, most research on patient-centred communication focuses on the clinicians’ initiative: what clinicians should do and what information they should seek to elicit from patients. It is equally important to recognize what each individual patient can contribute about his or her unique perspective on the disease, its treatment, and the effects on what is important to this patient. This thesis reports the development of a system for analyzing over 1500 utterances made by patients in eight video-recorded oncology consultations at the British Columbia Cancer Agency, Vancouver Island Centre. The analysis distinguishes between biomedical information that the patient can provide and patient-centred information, which contributes the individual patient’s unique perspective on any aspect of his or her illness or treatment. The resulting analysis system includes detailed operational definitions with examples, a decision tree, and .eaf files in ELAN software for viewing and for recording decisions. Two psychometric tests demonstrated that the system is replicable: high inter-analyst reliability (90% agreement between independent analysts) on a random sample of the data set and cross-validation to the remainder of the data set. A supplemental idiographic analysis of each consultation illustrates the important role that patient-centred information played in these consultations. This system could be an important tool for teaching clinicians to recognize the individual information that patients can provide and its relevance to their care. / Graduate / 0992 / 0451 / 0350 / shealing@uvic.ca

Thesis (MScEng)-- Stellenbosch University, 2013. / ENGLISH ABSTRACT: South Africa has a great number of patients and not enough medical expertise to attend to their patient needs. The South African Department of Health (DoH) has recognised the potential benefit of the Picture Archiving and Communication System (PACS) to address the health needs of rural patients who do not have access to specialised medical care. PACS allows specialist remote access to patient information to assist the diagnosis and treatment process remotely. South African healthcare institutions have been implementing PACS for over a decade, in an attempt to address the health needs of rural patients that do not have access to specialised medical care. Despite numerous deployment attempts, and the DoH’s support for PACS, the system is not operating successfully in South Africa. PACS was chosen due to its proven success as an appropriate technical system in most international hospitals of first and third- world countries (van Wetering, 2008) (Horri, 2010). However, specifications, guidelines and best practice operational methods for the appropriate PACS technical structure are lacking in South African literature and in governmental strategies. Additionally, there are no guidelines for implementation or support for hospital decision makers to manage the system and enterprise change. The purpose of this thesis is to (a) define a PACS technical and operational structure suited for the South African public healthcare environment and, (b) to develop guidelines for implementation and optimisation of PACS for managing the system and the enterprise change and progressively reach the defined structure. A combination of literature research, field observations and focus group discussions led to the understanding of the current (“As-Is”) PACS healthcare delivery system in South Africa and its barriers. Three types of PACS structures were found to be currently available: a DICOM-only image management system; a vendor supplied PACS; and a super-PACS. It was found that currently very few PACS systems in South Africa are operational and integrated with other healthcare institutions. This was due to a combination of factors: a) the complex, long chain of interdependent process steps and domains; b) vendor imposed limitations and propriety data formats; in combination with c) a lack of governing standards to ensure integration of digital PACS systems within the healthcare delivery environment; and lastly d) key decision makers lack the expert knowledge necessary to make informed decisions to deploy and manage PACS optimally. Further research led to establishing the (“To-Be”) PACS technical and operational structure suited for the South African public healthcare environment. Research has shown that the suited PACS technical and operational structure is a hospital-owned PACS system, free from vendor-imposed limits. The system consists of two databases, one with patient information and the other with patient images. The two databases are integrated by a hospital-owned server, which accesses the separate data files by means of patient identity keys. The requirements for the PACS implementation and optimisation guidelines for managing the system and the enterprise change to progressively reach the defined structure were developed. Different Enterprise Architectural Frameworks, as improvement and optimisation guidelines, were considered and compared in accordance with the requirements established. A maturity model (MM) was deemed as the appropriate framework to offer guidelines for managing PACS implementation and optimisation in the public medical sector of South Africa. After establishing that the available MMs were not sufficient in process or technical system detail, a new MM was developed for the deployment and maturation of PACS. The study was validated by means of usability study, user acceptance and goal checking, through focus group discussion and expert review. Users found the model to be a suitable deployment and optimisation guide, as well as a strategic planning tool. Verification was achieved by means of requirement analysis and consistency checking through the focus group discussions. It was found that it is needed to define a PACS technical and operational structure is suited for the South African public healthcare environment and that the guidelines for implementation and optimisation of PACS for managing the system and the enterprise needs to change to reach the defined structure functional. Implementing the use of PACS MM to reach the defined structure in South Africa will assist in improving healthcare delivery in South Africa and improving PACS system operation. / AFRIKAANSE OPSOMMING: Suid-Afrika het 'n groot aantal pasiënte en nie genoeg mediese kundiges om aan hul pasiënt behoeftes te voorsien nie. Die Suid-Afrikaanse Departement van Gesondheid (DvG) erken die potensiële voordeel van ‘n Foto Argief en Kommunikasie Stelsel (PACS) om die gesondheidsbehoeftes van alle Suid-Afrikaners aan te spreek – tot die landelike pasiënte wat nie toegang tot gespesialiseerde mediese sorg het nie. PACS laat spesialiste toe om toegang te kry tot afgeleë pasiënt inligting, en daardeur fasiliteer dit die diagnose- en behandelingsproses. Suid-Afrikaanse gesondheidsorginstellings poog al vir meer as ‘n dekade om PACS te implementeer, om daardeur die gesondheidsbehoeftes van landelike pasiënte wat nie toegang tot gespesialiseerde mediese sorg het nie, aan te spreek. Ten spyte van talle ontplooiings pogings, en die DvG se steun vir PACS, is die stelsel steeds nie suksesvol in Suid-Afrika nie. PACS is gekies as ‘n oplossing, as gevolg van die sisteem se bewese sukses as 'n geskikte tegniese stelsel in meeste internasionale hospitale in eerste en derde wêreld lande (van Wetering, 2008) (Horri, 2010). Suid-Afrikaanse regering strategie en literatuur het egter ‘n gebrek aan spesifikasies, riglyne en beste- praktyk operasionele metodes vir die toepaslike PACS tegniese struktuur. Benewens is daar geen riglyne vir die implementering en ondersteuning van die stelsel en die onderneming se verandering vir hospitaal besluitnemers nie. Die doel van hierdie tesis is om (a) 'n PACS tegniese en operasionele struktuur, geskik vir die Suid-Afrikaanse openbare gesondheidsorg omgewing te definieer, en (b) riglyne vir die implementering en afronding van PACS vir die bestuur van die stelsel en die onderneming se verandering teen doel om progressief die gedefinieerde struktuur te bereik. 'n Kombinasie van literatuur navorsing, veldwaarnemings en fokusgroepbesprekings het gelei tot die begrip van die huidige ("as- is") PACS gesondheidsorg proses in Suid-Afrika en die hindernisse daarvan. Drie tipes PACS strukture is tans beskikbaar in SA: 'n DICOM (net-mediese- beelde) beheer stelsel, 'n verkoper verskafde PACS, en 'n super-PACS. Deur uitgebreide navorsing is daar gevind dat baie min PACS stelsels in Suid-Afrika tans operasioneel en geïntegreer is met ander gesondheidsorg instellings. Dit was te danke aan 'n kombinasie van faktore: a) die kompleks, lang ketting van interafhanklike proses stappe en gebiede; b) ondernemer opgelê beperkings en ordentlikheid data formate; in kombinasie met c) 'n gebrek aan beheer standaarde integrasie van digitale PACS stelsels om te verseker binne die lewering van gesondheidsorg-omgewing, en laastens d) sleutel besluitnemers nie die deskundige kennis wat nodig is om ingeligte besluite te sit en te bestuur PACS optimaal te benut. Verdere navorsing het gelei tot die vestigting van die geskikde("to-be") PACS tegniese en operasionele struktuur, vir die Suid-Afrikaanse openbare gesondheidsorg omgewing. Die geskik PACS tegniese en operasionele struktuur bestaan uit ‘n hospitaal-besitde PACS stelsel, vry van ondernemer-opgelegde grense. Die stelsel bestaan uit twee databasisse, een met 'n pasiënt inligting en die ander met dei pasiënte se mediese beelde. Die twee databasisse geïntegreer deur 'n hospitaal-besitde-rekenaarbediener, wat toegang tot die afsonderlike data lêers het deur middel van die unieke pasiënt nommers. Die vereistes vir die PACS implementering en afrondings riglyne, vir die bestuur van die stelsel en die ondernemings veranderinge, is ontwikkel. Verskillende ondernimings argitektuur raamwerke is oorweeg en vergelyking in terme van hulle vermoe om aan die gesigde vereistes et voldoen. As ‘n resultaat is die volwassenheid model (MM) beskou as die toepaslike raamwerk om riglyne vir die bestuur van PACS implementering en afronding in die openbare mediese sektor van Suid-Afrika te bied. Na die beskikbare MMs geasseseer was en nie voldoende bewys is, was 'n nuwe MM ontwikkel vir die implementeering en afronding van PACS. Die studie was gevalideer deur middel van die bruikbaarheid studie, gebruikers aanvaarding en doelwit asseseering, deur middel van fokusgroep besprekings en kundige oorsig. Gebruikers het gevind dat die model geskikte as implementeerings en afrondings gids, sowel as 'n geskikte strategiese beplanning hulpmiddel is. Verifikasie is bereik deur middel van vereiste-ontleding en konsekwentheid analiseering deur die fokusgroep besprekings en spesifikasie analise. Die PACS tegniese en operasionele struktuur wat definieer was, is geskik vir die Suid-Afrikaanse openbare gesondheidsorg omgewing en dat die riglyne vir die implementering en afronding van PACS funksioneel is . Die implementering en gebruik van die gedefinieerde struktuur deur mideel van die PACS MM in Suid-Afrika, sal help in die verbetering van gesondheidsorg dienslewering en die verbetering van PACS stelsel operasie.

Due to a rapid increase in aging population, demand for personalized health care increases proportionally. Personalized patient data can be a helpful way of catering the needs and requirements of elderly people staying at home. Indirectly, it can be a manner of providing better eHealth services according to their needs. Another interesting aspect of providing better personalized eHealth services is to make patient information systems interoperable. Interoperability of eHealth systems is an issue of great concern to current research and development but in this study, we focus on patient information systems. Like in some other European countries, introduction of open source platform to achieve interoperability and personalization of patient information system could save money for health care organizations and make the procedure easier in Sweden also. The purpose of this study is to identify what standards are available for interoperability and what are the benefits and challenges of introducing open source systems for achieving personalized interoperable patient information systems (PIPIS). In light of this investigation, author has identified the benefits and challenges of introducing OSS for achieving PIPIS. Author has also made several recommendations regarding the challenges identified. / In the name of ALLAH, the most gracious and merciful. I extend my gratitude to the beautiful creator of this beautiful universe that He made for us to conquer. Without the love of my parents this thesis report could never be possible for me to write. All my love and care is for them which no one else can share. I thank Mr. Hans Kyhlbäck whose supervision is a source of inspiration for doing this study. He is definitely the best supervisor to work with. In the end, I would like to thank my friends and colleagues whose help just kept me going despite of many hurdles that I faced.

Patientlagen säger att en patient ska få individuellt anpassad information om sitt hälsotillstånd och om de metoder som finns för undersökning, vård och behandling. Det gäller såväl muntlig som skriftlig information. Studier visar att patienter värderar skriftlig information högt, men att det inte alltid finns information av bra kvalitet att tillgå. Syftet med det här examensarbetet är att undersöka hur man skulle kunna utforma skriftlig information till målgruppen underviktiga ungdomar 13–15 år som har adhd. Projektet är ett uppdrag av en dietist som saknar ett skriftligt material som hon kan lämna ut till sina patienter som ingår i målgruppen. Jag har undersökt vilka förutsättningar ungdomar med adhd har för att läsa och förstå en text. Jag har också undersökt vilken forskning som finns om utformning av patientinformation och andra typer av faktatexter med fokus på läsbarhet. Jag har sedan utgått från teorier om text och teorier om text och bild i samverkan för att undersöka vad som skulle kunna främja läsbarheten i patientinformation till målgruppen. Undersökningen visar att det finns flera olika faktorer som påverkar läsning och läsförståelse hos ungdomar som har adhd. Dessa är svårigheter med koncentration och motivation, nedsatt arbetsminne och läs- och skrivsvårigheter. Med hjälp av insamlad empiri och teorier om text och teorier om text och bild i samverkan har jag skapat ett gestaltningsförslag i form av en broschyr med kostråd till målgruppen. Mottagaranpassningen av texten handlar i huvudsak om att använda en enkel layout som inte distraherar läsaren. Den skrivna texten har ett enkelt men inte barnsligt språk och en meningslängd som skapar flyt i texten.

Patienter med smärta är vanligt förekommande inom den svenska sjukvården, vilket orsakar lidande hos såväl patient som samhälle. Personcentrerad information ger delaktighet och möjliggör egenvård, vilket genererar lindrat lidande och en vårdande vård. Problem som examensarbetet belyser är att patienten betalar priset då vården stundtals saknar ett holistiskt synsätt. Även ses obehandlad och underbehandlad smärta generera negativa konsekvenser och ökat patientlidande. Syftet med studien var att undersöka hur patientinformation påverkar patientens förmåga att hantera smärta. Examensarbetet bygger på en litteraturöversikt, baserad på kvalitativa forskningsstudier. Datainsamlingen resulterade i 12 artiklar, vilket gav ett huvudtema med fyra underteman. Resultatet visade att informationsutbyte mellan patient och vårdgivare gav större delaktighet för patienten och underlättade vårdgivarens möjlighet att vårda. Information kring smärta och smärtlindring bör vara individuell och delges patienten på det sättet patienten upplever bäst. Patienter beskrev vikten av en tillitsfull relation till sin vårdpersonal och nämnde ord som ögonkontakt, närvaro och ett aktivt lyssnande i det vårdande mötet. Där patienter inte upplevde vården vårdande väcktes känslor av ledsamhet, irritation och ilska. Bra information gav ökad möjlighet till egenvård. Patienter såg behov av tillförlitlig och uppdaterad information, vilket kunde ges via e-hälsa. Denna informationskanal visade sig leda till positiva förändringar i patienters humör och beteenden, vilket i slutändan resulterade i minskad smärta. Slutsatser som ses är att patienter med smärta är i behov av individanpassad information. Patienter önskar bli sedda, lyssnade till och tagna på allvar. Vården måste få ta tid, då det vårdande mötet visat sig kunna lindra människors smärta. / Within the Swedish health system, patients with pain are common. Not only does the individual patient suffer but so does the overall society. By providing person-centered information patients enables participation and self-care, resulting in relieved suffering and overall caring. However, the problem this study highlights is the lack of holistic nursing in caring. Pain that remains untreated or not treated sufficiently will generate negative consequences and increased suffering amongst the patients. The main purpose of the study was to further investigate how the patient’s ability to manage pain was affected by the patient information that was provided. The thesis of this dissertation is based on a literature review of data provided in multiple qualitative research studies. Twelve articles of qualitative research were used. The information provided in the articles resulted in one main theme and four sub-themes. The results proved that the exchange of information between patient and healthcare provider lead to greater patient participation and facilitated caring. Information about pain and pain relief should be individual and communicated to the patient with an individualized approach in mind. Patients described the importance of a trusting relationship with their healthcare provider and mentioned words such as eye contact, presence and active listening in the care meeting. When patients did not experienced true care, feelings of sadness, irritation and anger surfaced. In addition, by providing correct and personalized information regarding pain management the opportunities for self-care increased. There is a need for patients to receive reliable and up-to-date information, which can be achieved via e-health. Utilizing e-health as a means of communications has proved to be of great value, resulting in positive changes in patients' moods and behaviors ultimately resulting in overall reduced pain. In conclusion, patients with pain need personalized information. Patients want to be seen, heard and understood. The care must be allowed to take time, as the caring has been shown to ease suffering.

In einer repräsentativen Querschnittsuntersuchung wurden 1219 Multiple Sklerose Betroffene in Deutschland zu den Auswirkungen der Multiple Sklerose auf deren Lebenssituation und ihrer Einschätzung der medizinischen Versorgung befragt. Schwerpunkte der Untersuchung, die auf einem integrativen Konzept der Patientenorientierung beruht, waren: Soziale Auswirkungen, Krankheitswahrnehmung, Alltagsbewältigung, Lebensqualität, Patienteninformation, Arzt-Patient-Beziehung, Therapieentscheidung und das ACT Programm in der medizinischen Versorgung. Negative Auswirkungen der Multiple Sklerose auf die untersuchten Lebensbereiche sind nachweisbar, aber die Einschätzung differiert in Abhängigkeit von der konkreten Lebenssituation und der Persönlichkeit. Der Schweregrad der körperlichen Einschränkungen steht nur bedingt in Beziehung zur subjektiven Einschätzung der Auswirkungen. Es bestätigt sich außerdem die besondere Bedeutung des nahen persönlichen Umfeldes als wichtigste Quelle der Unterstützung Multiple Sklerose Betroffener. Professionelle Unterstützung wird nur in geringem Maß in Anspruch genommen. Die Anforderungen der Befragten an die medizinische Versorgung sind sehr hoch. Negative Bewertungen der medizinischen Betreuung zeigen sich sowohl bei kritischeren Befragten und als auch bei ausgeprägten Autonomiebedürfnis. Die befragten Multiple Sklerose Betroffenen nutzen überwiegend objektive Informationsquellen als allgemeine Informationsbasis und zur Therapieentscheidung. Subjektives Erfahrungswissen wird meist nur ergänzend herangezogen. Veränderungsbedarf besteht in der medizinischen Versorgung im Bezug auf die Integration kritischerer, informierterer, selbstbewussterer Multiple Sklerose Betroffene und in Bezug auf den Zugang zu den vorhandenen Informations-, Unterstützungs- und Beratungsangeboten. / In a representative study 1219 people with multiple sclerosis in Germany were asked about the impacts of multiple sclerosis on their living situation and their estimation of the medical supply. Main topics were: social impacts, perception of the disease, coping with everyday life, quality of life, patient information, doctor-patient-relationship, shared decision making and the ACT programme as tool in the medical supply. Negative impacts on all analysed areas of the living situation could be proved, but the estimation differs in dependence on the specific living situation and the personality. Unlike the physical disability isn''t a predictor of the individual estimation of the impact. People with multiple sclerosis get their main support by relatives and friends. Professional services are rarely used in relation to the aid by the individual social environment. People with multiple sclerosis have very high expectations on the medical supply. The estimation of the situation is relatively negative if the people are more critical as well as if they have a great need for autonomy. The interrogated people with multiple sclerosis use basically and for their therapy decision mostly objective, medical information. Most of them use subjective knowledge based on experiences only additionally. Medical supply should be optimised by better integrating people with multiple sclerosis who are more critical or self confident as well as better informed. Usability and access of the existing offers to inform, support and counsel people with multiple sclerosis have to be improved.