[White Paper - Improving the care of patients with impairments following sepsis and infections]. / White Paper ­ Verbesserung der Versorgungs- und Behandlungsangebote für Menschen mit Sepsis- und Infektionsfolgen.

Hundreds of thousands of individuals who experience lasting sequelae after sepsis and infections in Germany do not receive optimal care. In this White Paper we present measures for improvement, which were developed by a multidisciplinary expect panel as part of the SEPFROK project. Improved care rests on four pillars: 1. cross-sectoral assessment of sequelae and a structured discharge and transition management, 2. interdisciplinary rehabilitation and aftercare with structural support, 3. strengthening the specific health literacy of patients and families, and 4. increased research into causes, prevention and treatment of sequelae. To achieve this, appropriate cross-sectoral care structures and legal frameworks must be created.

[Needs assessment to improve the applicability and methodological quality of a German S3 guideline]. / Bedarfsanalyse zur Verbesserung der Anwendbarkeit und methodischen Qualität einer S3-Leitlinie.

BACKGROUND: Clinical practice guidelines can change the practice in healthcare only if their recommendations are implemented in a comprehensive way. The German S3 guideline "Local Therapy of Chronic Wounds in Patients with Peripheral Vascular Disease, Chronic Venous Insufficiency, and Diabetes" will be updated in 2017. The emphasis here is on the guideline's validity, user-friendliness and implementation into practice. Therefore, the aim was to identify the improvements required in regard to the guideline's methods and content presentation. METHODS: The methodological approach used was the critical appraisal of the guideline according to established quality criteria and an additional stakeholder survey. Both were conducted between August and November 2016. The guideline and its related documents were reviewed independently by two researchers according to the criteria of the "Appraisal of Guidelines for Research and Evaluation" (AGREE-II). Published reviews and peer reviews by external experts and organisations were also taken into account. For the stakeholder survey, a questionnaire with open questions was distributed by e-mail and via the Internet to health professionals and organisations involved in the care of patients with leg ulcers in Germany. The questions were aimed at amendments and new topics based on the stakeholders' experience in inpatient and outpatient care. In addition, the survey focused on gathering suggestions to improve the applicability of the guideline. Suggested new topics and amendments were summarised thematically. The stakeholders' suggestions to improve the applicability, the results of the critical appraisal and the relevant aspects of the external reviews were then summarised according to the AGREE-II domains and presented in a cause and effect diagram. RESULTS: 17 questionnaires (out of 864 sent out by e-mail) were returned. Due to high practice relevance, the stakeholders suggested an expansion of the inclusion criteria to patients with infected wounds and pressure ulcers. They also proposed that plastic surgical procedures, several specific wound products and complementary measures should be included. The guideline is of high methodical quality with respect to the systematic synthesis and the formal expert recommendations. From both the stakeholders' and reviewers' perspectives, the guideline should be more in line with what guideline users regarded as key issues. The recommendations should be more action-oriented. Implementation concepts should be provided to teach, implement and evaluate the guideline in healthcare facilities. The updating process should also follow current standards for guideline development, for systematic reviews and for managing conflict of interests. CONCLUSION: The guideline is of high methodological quality but currently difficult to implement in clinical practice. The structured evaluation clearly reflects not only the potential for improvement but also provides a transparent theoretical framework for experts and scientific medical societies involved in the guideline updating process. Although some valuable insights were gained from the stakeholders' perspective, the representativeness is limited by the low response rate.

Psychenet.de: Development and process evaluation of an e-mental health portal.

BACKGROUND: E-mental health interventions can have a positive impact on patient-reported and clinical outcomes. The purpose of this project was to develop a user-centered e-mental health portal. METHODS: The development of the portal www.psychenet.de included mixed-methods techniques for needs assessment to identify user-relevant content. Furthermore, user-centered design techniques were applied by utilizing individual usability testing with cognitive task analysis. First, a basic version of the portal was created and introduced to the public by means of a media campaign. After the development of module-specific content, exposure and use of the portal was investigated as part of a process evaluation. RESULTS: Relevant content identified by needs assessment covered both, overarching and diagnosis-specific topics. Results of the process evaluation showed a highly accessed website. During the first 18 months, 119,423 visits were tracked. The portal was predominantly accessed by Google searches (73.9%), while 17.6% of visits were related to direct traffic. DISCUSSION: Serving as a complement to face-to-face consultations, www.psychenet.de attempts to inform about mental disorders, and engage patients in the course of their treatment. Results of the process evaluation confirm the high relevance and potential of the portal and can be used for further improvements and extensions in the future.

[Development and Process Evaluation of the e-Mental Health Portal www.psychenet.de for the Hamburg Network for Mental Health]. / Entwicklung und Evaluation des Webportals www.psychenet.de für das Hamburger Netz psychische Gesundheit.

OBJECTIVE: The purpose of this project was to develop a user-centered web-portal for empowerment in mental disorders. METHODS: The development of the portal included mixed-methods techniques for needs assessment to identify user-relevant content. Exposure and use of the portal was investigated as part of a process evaluation. RESULTS: psychenet.de informs about mental disorders and treatment option. Results of the process evaluation showed a highly accessed website, the portal was assessed as "good" or "very good" by 73 % of the respondents. DISCUSSION: Using psychenet.de attempts to raise awareness, to inform about mental disorders, and to engage patients in the course of their treatment.

[Improving Mental Health Literacy and Mental Illness Stigma in the Population of Hamburg]. / Verbesserung von Aufklärung, Wissen und Stigmatisierung psychischer Erkrankungen in der Hamburger Bevölkerung.

Evidence shows that poor mental health literacy and stigmatization have negative consequences on mental health. However, studies on interventions to improve both are often heterogenic in methodology and results. The psychenet-campaign in Hamburg was developed and implemented in collaboration with patients and relatives and comprised multidimensional interventions focusing on education and contact to patients. The main goals were the improvement of mental health literacy and destigmatization and the long-term implementation within Hamburg's mental health care system.

[Development of patient education materials for the "German Prostate Cancer Trial PREFERE"]. / Entwicklung von Aufklärungsmaterialien für die "Deutsche Prostatakrebsstudie PREFERE".

The German prostate cancer study PREFERE (www.prefere.de) started in January 2014. It is the first randomised controlled and preference-based trial to investigate all four options available for the treatment of organ-confined prostate cancer. According to the "Interdisciplinary evidence-based S3 guideline for the early detection, diagnosis and treatment of the different stages of prostate cancer" [1], these options include: radical prostatectomy, external radiotherapy, brachytherapy and active surveillance. In the context of PREFERE preference-based means that potential study participants who do not agree to being randomised into all four treatment arms can maximally refuse two treatment arms. This poses a big challenge to the patient education strategy employed and the information material it requires. In order to inform patients in the context of the PREFERE trial patient education materials (patient leaflet and video) had to be designed that provide patients with balanced and guideline-based information about the disease and the treatment options available, about the need for randomisation and, in particular, about the PREFERE trial and support their individual preference finding and shared decision making for participating in the trial. An iterative structured approach was used to develop the information materials on the basis of a previous literature search. Six focus groups with a total of 40 participants from three different self-help groups, affected men that do not belong to a self-help group, healthy men as well as experts, the members of the steering committee of the PREFERE trial and a focus group consisting of 18 male and female urologists were involved in the development and testing of both the patient information leaflet and the patient video. Both the patient information leaflet and the video supporting preference finding and decision making for participating in the PREFERE trial were tested for understandability and suitability by using a questionnaire and conducting a comprehensive discussion. The results of these lay evaluations have been included in the final revision. Also, a communication resource for physicians has been created comprising all the essential aspects of the PREFERE patient education materials. A short course conducted all over Germany will focus on the process of patient teaching as well as patient education materials. Whether and to what extent the decision for participating in the PREFERE trial has actually been influenced 1) by what the treating physicians communicated to the patient and 2) by the patient education materials used is one of the subjects of a quality of life survey that will be conducted following treatment or - in the case of the active surveillance option - after randomisation during the PREFERE trial.

Patient and public involvement in clinical guidelines: international experiences and future perspectives.

BACKGROUND: Clinical practice guidelines (CPG) are important tools for improving patient care. Patient and public involvement is recognised as an essential component of CPG development and implementation. The Guideline International Network Patient and Public Involvement Working Group (G-I-N PUBLIC) aims to support the development, implementation and evaluation of guideline-oriented patient and public involvement programmes (PPIPs). OBJECTIVE: To develop an international practice and research agenda on patient and public involvement in CPG. METHOD: 56 CPG developers, researchers, and patient/public representatives from 14 different countries, were consulted in an international workshop. Recommendations were validated with G-I-N PUBLIC steering committee members. RESULTS: Many CPG organisations have set up PPIPs that use a range of participation, consultation and communication methods. Current PPIPs aim to improve the quality and responsiveness of CPGs to public expectations and needs, or to foster individual healthcare decisions. Some organisations use structured involvement methods, including providing training for patient and public representatives. A number of financial, organisational and sociopolitical barriers limit patient and public involvement. The paucity of process and impact evaluations limits our current understanding of the conditions under which patient and public involvement is most likely to be effective. CONCLUSION: Greater international collaboration and research are needed to strengthen existing knowledge, development and evaluation of patient and public involvement in CPG.

[Patient involvement in clinical guideline development: are patient organisations prepared for this task?]. / Patientenbeteiligung an der Leitlinienentwick- lung--sind die Patientenorganisationen für diese Aufgabe gerüstet?

The involvement of patients in the development of clinical guidelines essentially aims at ensuring and improving the quality of patient-centred care. Hence, it becomes an important tool for quality management in medicine since patients are learning the hard way where clinical care is lacking. This may include the inappropriate consideration of current medical knowledge, the unintelligible or insufficient information and education of the patient or information gaps at the interface between care settings. These experiences from the patients' perspective can be purposefully integrated in quality assurance measures, for example, by including the patient perspective in clinical guidelines and patient guidelines. Suitable procedures for the collection and presentation of the experiences of patient organisations are essential for the successful involvement of patients in guideline programmes. Patient organisations collect data on the experiences and attitudes of their members for different purposes. A systematic approach has been sought but hardly practised so far. This is the result demonstrated in a survey among 112 member organisations of the "Bundesarbeitsgemeinschaft SELBSTHILFE von Menschen mit Behinderung und chronischer Erkrankung und ihren Angehörigen e.V." (BAG SELBSTHILFE), a federal German self-help association of disabled and chronically ill people and their relatives. Patient participation in the "Programm for Nationale VersorgungsLeitlinien" ["Programme for National Disease Management Guidelines"] has been practised at the Agency for Quality in Medicine (AEZQ) since 2005. The experiences that have been made by those involved with integrating the concerns of patient representatives provide a starting point for a practical handout for patients and consumers participating in guideline programmes. The "Handbuch Patientenbeteiligung-Beteiligung am Programm für Nationale VersorgungsLeitlinien" [Handbook of Patient Participation in the Programme for National Disease Management Guidelines] is intended to make the process of patient participation in guideline programmes transparent and practicable. It describes the background, the organisation and the process of patient participation and offers useful advice to participating patient organisations and their representatives. In this context the question of how patient experiences might be introduced in the guideline and patient guideline development process in a structured and purposeful manner is of special importance. But so far there is too little experience, both nationally and internationally. A survey among self-help organisations shall provide an initial overview.

[A survey among pregnant women about their expectations towards the maternity clinic to inform internal quality improvement procedures]. / Eine Befragung von Schwangeren zu Erwartungen an die Geburtsklinik für klinikinterne Massnahmen zur Qualitätsförderung.

INTRODUCTION: Transparent and effective quality management is an essential marketing tool for maternity clinics. Procedures for quality assurance in maternity clinics differ from those in other medical professions. Apart from evidence-based health care the pregnant woman's choice of maternity services providers is increasingly influenced by a number of other factors as well, such as, for example, the response to individual needs or the staff. Hence, the facilities need to present their services and quality of care according to the needs of the target group. METHODS: In order to identify these needs, a survey was performed among 152 pregnant women during the "Baby Fair", which took place in Berlin in 2006. The objective of the survey was to find out about the preferences and expectations of pregnant women towards the maternity clinic and breastfeeding and their current criteria for the choice of a maternity clinic. The questionnaire contained questions about expectations towards the maternity clinic staff, traditional medicine and alternative medicine, premises, courses offered, rooming-in and expectations towards breastfeeding. RESULTS: The findings from the survey show that the pregnant women's ratings for personal contact, expertise and kindness of the staff were twice as high as for premises, comfort and service. The provision of traditional versus alternative medicine was rated equally. More than 90% of the respondents do see a demand for specific public relations campaigns by maternity clinics concerning information about the particular institution, its range of activities and the impact and process of rooming-in. Only 20% of the respondents felt sufficiently informed about breastfeeding. CONCLUSION: Besides medical and technical factors, staff factors play a key role in the assessment of maternity clinics. In addition to evidence-based medical information communication strategies should also include information on the staff employed. In particular, information is lacking on rooming-in and breastfeeding, which emphasises the necessity for the timely provision of scientifically based information to pregnant women.

[Method report 2007 of the Programme for National Disease Management Guidelines--background and content]. / Der Methodenreport 2007 des Nationalen Programms für VersorgungsLeitlinien - Hintergrund und Inhalt.

The Programme for National Disease Management Guidelines (German DM-CPG Programme) was established in 2002 by the German Medical Association (umbrella organisation of the German Chambers of Physicians) and joined by the Association of the Scientific Medical Societies (AWMF)--umbrella organisation of more than 150 professional societies--and by the National Association of Statutory Health Insurance Physicians (NASHIP) in 2003. The programme provides a conceptual basis for disease management, focussing on high priority healthcare topics and aiming at the implementation of best practice recommendations for prevention, acute care, rehabilitation and chronic care. It is organised by the German Agency for Quality in Medicine, a founding member of the Guidelines International Network G-I-N. The main objective of the German DM-CPG Programme is to establish consensus among the medical professions on evidence-based key recommendations covering all sectors of healthcare provision and facilitating the coordination of care for the individual patient through time and across interfaces. Within the last year DM-CPGs have been published for asthma, COPD, type 2 diabetes and coronary heart disease. In addition, experts from national patient self-help groups have been developing patient guidance based upon the recommendations for healthcare providers. The article describes background, methods and tools of the DM-CPG programme using the DM-CPG Method Report 2007.

[Shared decision-making based on equal information. Patient guidelines as a tool for patient counseling]. / Auf einheitlicher Basis entscheiden: die Rolle von NVL-basierten PatientenLeitlinien.

In discussions on the quality of cross-sectorial health-care services high importance is attributed to patient education and patient counseling, with guideline-based patient information being considered a crucial tool. Guideline-based patient information is supposed to serve patients as a decision-making basis and, in addition, to also support the implementation of the guidelines themselves. The article highlights how patient guidelines for National Disease Management Guidelines in Germany--within the scope of patient education and patient counseling--may provide a uniform information platform for physicians and patients aiming to promote shared decision-making. The authors will also address the issue which contents should be included in patient guidelines in order to meet these requirements and which measures are required to review their quality. The present paper continues the series of articles on the Program for German National Disease Management Guidelines.

[Participation of patients in the program for national disease management guidelines--current state and implications]. / Patientenbeteiligung am Programm für Nationale VersorgungsLeitlinien - Stand und Konsequenzen.

Patient involvement has been implemented in the Program for National Disease Management Guidelines since 2005. Currently patient/consumer participation is being incorporated in terms of patients' comments of consultation papers on National Disease Management Guidelines (NDMG) and in the development of NDMG-based patient guidelines (PG). The editorial activities in patient guideline development from the beginnings to its publication are conducted in close cooperation with the patient representatives appointed by the Patient Forum. Between June 2005 and September 2006, three NDMG and three patient guidelines on asthma, chronic obstructive pulmonary disease (COPD) and chronic coronary artery disease (CAD) were produced by including patients in the guideline development process. The information provided in these guidelines is freely accessible at http://www.versorgungsleitlinien.de. The present contribution focuses on the development of patient guidelines. It describes the current state of patient involvement and joint work and indicates the implications that can be derived from patient participation in the NDMG Program. Accompanying the involvement procedures, experiences resulting from previous NDMG and PG development activities are continuously investigated for the possibility of further methodological development of consumer participation by a work group of the Patient Forum in coordination with the patient organizations involved. In particular, the procedures resulting from more intensive patient participation in patient guideline development are to be examined as to their relevance for the expansion of patient involvement in NDMG development.

[The German program for disease management guidelines. Background, methods, and development process]. / Nationale Versorgungsleitlinien von BAK, AWMF und KBV : Hintergrund, Methodik und Instrumente.

The Program for National Disease Management Guidelines (German DM-CPG Program) was established in 2002 by the German Medical Association (umbrella organization of the German Chambers of Physicians) and joined by the Association of the Scientific Medical Societies (AWMF; umbrella organization of more than 150 professional societies) and by the National Association of Statutory Health Insurance Physicians (NASHIP) in 2003. The program provides a conceptual basis for disease management, focusing on high-priority health-care topics and aiming at the implementation of best practice recommendations for prevention, acute care, rehabilitation and chronic care. It is organized by the German Agency for Quality in Medicine, a founding member of the Guidelines International Network (G-I-N). The main objective of the German DM-CPG Program is to establish consensus of the medical professions on evidence-based key recommendations covering all sectors of health-care provision and facilitating the coordination of care for the individual patient through time and across interfaces. Within the last year, DM-CPGs have been published for asthma, chronic obstructive pulmonary disease, type 2 diabetes, and coronary heart disease. In addition, experts from national patient self-help groups have been developing patient guidance based upon the recommendations for health-care providers. The article describes background, methods, and tools of the DM-CPG Program, and is the first of a publication series dealing with innovative recommendations and aspects of the program.

[Clinical practice guidelines in Germany, 1994 to 2004. From guideline methodology towards guideline implementation]. / Medizinische Leitlinien in Deutschland, 1994 bis 2004. Von der Leitlinienmethodik zur Leitlinienimplementierung.

The role of clinical practice guidelines (CPG) as a tool for continuous medical education (CME), and quality management in health care is now widely accepted in Germany. Since the 90ies, the physicians' professional associations as well as health care authorities and parliament have been introducing several incentives and regulations in order to promote the use of evidence based CPG. In the past German CPG agencies have been focussing their work on developing and optimising methodological CPG standards. Future CPG activities should address much more other key factors for the success of CPGs, such as medical relevance, practicability, effective dissemination, and implementation. The article describes the process of guideline adaptation by regional physician audit groups as a tool for CPG implementation.