[Development of Decision Aids for Organized Cervical Carcinoma Screening in Germany]. / Entwicklung von Entscheidungshilfen für das organisierte Zervixkarzinom-Screening in Deutschland.

AIM OF THE STUDY: The Federal Joint Committee has decided to introduce organized cervical carcinoma screening in 2020. The present work describes the development of decision aids that will be sent to women in this program. METHODS: A systematic search for qualitative studies and surveys was conducted to gather information on experiences, attitudes and information needs. Furthermore, we searched for systematic reviews on advantages and disadvantages of screening. An existing decision analysis for cervical carcinoma screening in Germany was used. The designs were subjected to a qualitative test (focus groups with 26 women and 8 expert interviews), to a quantitative user test (online survey n=2,014 women) and to a public hearing. RESULTS: Most women found the decision aids informative and helpful. The majority would recommend the use of these materials to others. For many women, part of the information was new, although they had been involved in cervical cancer screening for some time. The presentation of the advantages and disadvantages was judged to be balanced. However, 10% changed their attitude towards participation and 70% of women would attend screening. CONCLUSION: The decision aids found a high acceptance among the users. They can help to reduce knowledge deficits on cervical carcinoma screening and support a informed decision making.

Health information for hard-to-reach target groups: A qualitative needs assessment.

INTRODUCTION: Reaching socially disadvantaged families and older people with health information can be challenging. A needs assessment was conducted to learn more about their health-related needs and preferences and derive recommendations for health information. METHODS: Focus groups were conducted with socially disadvantaged families, older people and suitable disseminators, like counsellors from various types of counselling centres or welfare facilities (81 participants), and analysed using content analysis. RESULTS: Socially disadvantaged and hard-to-reach people want to understand health problems, become active in dealing with them themselves, and be involved in medical decision-making. Health information should consider the challenging everyday lives, the limited time available and the short attention span of socially disadvantaged families. There is a preference for short texts and videos. Older people may favour more comprehensive print products for complex topics. Matching photos and illustrations are vital to attract attention. Health information is preferably received via personal contact. Furthermore, online services and social media channels are popular. DISCUSSION: Some recommendations can be helpful for all target groups of health information, like more illustrations. Others are more specific to the groups investigated and require conceptual groundwork and greater resources, for example, a specific service for disseminators. CONCLUSION: Hard-to-reach target groups want to understand their health issues, and be proactive and involved in decision-making. Personal contact is of utmost importance. Disseminators play a crucial role and need information they can customize for their clients.

Choosing health technology assessment and systematic review topics: the development of priority-setting criteria for patients' and consumers' interests.

BACKGROUND: The Institute for Quality and Efficiency in Health Care (IQWiG) was established in 2003 by the German parliament. Its legislative responsibilities are health technology assessment, mostly to support policy making and reimbursement decisions. It also has a mandate to serve patients' interests directly, by assessing and communicating evidence for the general public. OBJECTIVES: To develop a priority-setting framework based on the interests of patients and the general public. METHODS: A theoretical framework for priority setting from a patient/consumer perspective was developed. The process of development began with a poll to determine level of lay and health professional interest in the conclusions of 124 systematic reviews (194 responses). Data sources to identify patients' and consumers' information needs and interests were identified. RESULTS: IQWiG's theoretical framework encompasses criteria for quality of evidence and interest, as well as being explicit about editorial considerations, including potential for harm. Dimensions of "patient interest" were identified, such as patients' concerns, information seeking, and use. Rather than being a single item capable of measurement by one means, the concept of "patients' interests" requires consideration of data and opinions from various sources. CONCLUSIONS: The best evidence to communicate to patients/consumers is right, relevant and likely to be considered interesting and/or important to the people affected. What is likely to be interesting for the community generally is sufficient evidence for a concrete conclusion, in a common condition. More research is needed on characteristics of information that interest patients and consumers, methods of evaluating the effectiveness of priority setting, and methods to determine priorities for disinvestment.

Unrelated donor stem cell transplantation in acquired severe aplastic anemia: a systematic review.

Acquired severe aplastic anemia is a rare disease characterized by an immune-mediated functional impairment of hematopoietic stem cells. Transplantation of these cells from unrelated donors is a treatment option frequently offered to patients after failed immunosuppressive therapy. The aim was to investigate the outcome of these patients treated with unrelated donor transplants. Systematic literature searches were performed in MEDLINE, EMBASE, and The Cochrane Library. All databases were searched from inception to June 2009. Only full-text publications and studies including at least 10 patients were considered. The primary outcome was 5-year overall survival from the day of transplantation and the secondary outcomes were graft failure and graft-versus-host disease. A meta-analysis of survival estimates was conducted and heterogeneity was investigated. A total of 18 studies, one controlled trial and 17 case series were identified. The overall survival at five years and the corresponding confidence interval was stated in 8 studies and ranged from 28% to 94%. A meta-analysis revealed considerable heterogeneity between the studies that could not be explained and was also present in subgroups of the studies. The proportion of acute graft failure was 45% in one study using only umbilical cord blood, and it was reported to be 0-26% in 15 studies using mainly bone marrow as stem cell source after different follow-up periods. Acute GVHD grade II-IV was reported for 8-86% and extensive chronic GVHD for 0-38% of the evaluated patients in 16 studies. Recipient age, human leukocyte antigen match, performance status, year of transplantation, and conditioning with serotherapy were identified as significant factors for improved survival. Unrelated donor hematopoietic stem cell transplantation in patients with acquired severe aplastic anemia after failure to immunosuppressive therapy is a treatment option. A stable physical condition of the patients before receiving the transplant (for example, performance and age) may be associated with a better survival. Detailed HLA-matching facilitated by DNA-based typing, among other factors, may have contributed to recent improvements on survival after unrelated donor HSCT as a second-line treatment.

[Health information on the Internet: Who is searching for what, when and how?]. / Gesundheitsinformationen im Internet: Wer sucht was, wann und wie?

INTRODUCTION: The Institute for Quality and Efficiency in Health Care (IQWiG, Germany) has a statutory mandate to provide patients and their family members as well as the wider public with evidence-based health information (www.informedhealthonline.org). Since 2006 IQWiG has maintained the publicly available website gesundheitsinformation.de. Currently, about 80 million people live in Germany, and the majority of them have internet access. The goal of this project was to evaluate published studies examining health information seeking behaviour (who, when and how) on the internet. METHODS: A systematic search was conducted in several databases (PubMed, MEDLINE [Ovid)], PsycInfo [Ovid] und CINAHL [Ebsco]) for studies on internet searches for health information. No study type restrictions were imposed. Data were extracted from the relevant studies, and then discussed in the project group and summarised qualitatively. RESULTS: Of the 1,150 abstracts identified, 169 publications were analysed in full. 74 studies were included, most of which were surveys (n=59). The data were extracted from these studies and then summarised qualitatively to obtain an overview of the current state of research in this field. The results suggest that the group most often searching for health-related information on the internet - either on their own behalf or on behalf of others - consists of middle-aged women with a higher level of education and income. The most common reason for initiating a search for health information is a visit to the doctor, and the most common starting point is a search engine. Page layout and user-friendliness are the main criteria for assessing the credibility of websites and the information they provide. Users are more likely to trust information that is consistent with their own experiences and opinions. DISCUSSION: There is a growing trend of using the internet as a source for health information. It seems that trust in the credibility of a given website or information mostly depends on factors that are hardly related to the quality of content. This may pose a particular challenge for the creation and dissemination of evidence-based health information. Further research is required to examine the needs of the individual groups using internet-based health information.

[Online surveys at www.gesundheitsinformation.de: identifying the potential need for evidence-based health information]. / Online-Umfragen auf Gesundheitsinformation.de: Ermittlung potenzieller Informationsbedürfnisse für evidenzbasierte Gesundheitsinformationen.

There is some evidence that involving patients in the development of health information can increase the relevance and understandability of this information. The German Institute for Quality and Efficiency in Health Care (IQWiG) publishes easy-to-understand and freely accessible evidence-based health information on its bilingual website gesundheitsinformation.de / informedhealthonline.org. The aim of the Institute is to determine the information needs of the general public and patients, and to take those needs into account when producing its health information. One way in which this is done is by carrying out online surveys before the information is produced, asking the users of the website about their level of interest in various aspects of a topic. In this article we present two examples of such surveys - on the topics of "endometriosis" and "skin cancer screening and prevention" - as well as the results of these surveys and how the results influenced the contents of the health information produced. Our experience with a total of seven surveys suggests that online surveys can be a helpful additional tool to identify information gaps and determine information needs and areas of special interest. In addition, surveys provide a way to interact with the users of the website. In their current form, however, online surveys also have methodological limitations that need to be considered when developing these surveys and interpreting their results.