Importance of hemodialysis-related outcomes: comparison of ratings by a self-help group, clinicians, and health technology assessment authors with those by a large reference group of patients.

BACKGROUND: The selection of important outcomes is a crucial decision for clinical research and health technology assessment (HTA), and there is ongoing debate about which stakeholders should be involved. Hemodialysis is a complex treatment for chronic kidney disease (CKD) and affects many outcomes. Apart from obvious outcomes, such as mortality, morbidity and health-related quality of life (HRQoL), others such as, concerning daily living or health care provision, may also be important. The aim of our study was to analyze to what extent the preferences for patient-relevant outcomes differed between various stakeholders. We compared preferences of stakeholders normally or occasionally involved in outcome prioritization (patients from a self-help group, clinicians and HTA authors) with those of a large reference group of patients. PARTICIPANTS AND METHODS: The reference group consisted of 4,518 CKD patients investigated previously. We additionally recruited CKD patients via a regional self-help group, nephrologists via an online search and HTA authors via an expert database or personal contacts. All groups assessed the relative importance of the 23 outcomes by means of a discrete visual analog scale. We used descriptive statistics to rank outcomes and compare the results between groups. RESULTS: We received completed questionnaires from 49 self-help group patients, 19 nephrologists and 18 HTA authors. Only the following 3 outcomes were ranked within the top 7 outcomes by all 4 groups: safety, HRQoL and emotional state. The ratings by the self-help group were generally more concordant with the reference group ratings than those by nephrologists, while HTA authors showed the least concordance. CONCLUSION: Preferences of CKD patients from a self-help group, nephrologists and HTA authors differ to a varying extent from those of a large reference group of patients with CKD. The preferences of all stakeholders should form the basis of a transparent approach so as to generate a valid list of important outcomes.

[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.

A descriptive review on methods to prioritize outcomes in a health care context.

BACKGROUND: Evidence synthesis has seen major methodological advances in reducing uncertainty and estimating the sizes of the effects. Much less is known about how to assess the relative value of different outcomes. OBJECTIVE: To identify studies that assessed preferences for outcomes in health conditions. SEARCH STRATEGY: we searched MEDLINE, EMBASE, PsycINFO and the Cochrane Library in February 2014. INCLUSION CRITERIA: eligible studies investigated preferences of patients, family members, the general population or healthcare professionals for health outcomes. The intention of this review was to include studies which focus on theoretical alternatives; studies which assessed preferences for distinct treatments were excluded. DATA EXTRACTION: study characteristics as study objective, health condition, participants, elicitation method, and outcomes assessed in the study were extracted. MAIN RESULTS: One hundred and twenty-four studies were identified and categorized into four groups: (1) multi criteria decision analysis (MCDA) (n = 71), (2) rating or ranking (n = 25), (3) utility eliciting (n = 5) and (4) studies comparing different methods (n = 23). The number of outcomes assessed by method group varied. The comparison of different methods or subgroups within one study often resulted in different hierarchies of outcomes. CONCLUSIONS: A dominant method most suitable for application in evidence syntheses was not identified. As preferences of patients differ from those of other stakeholders (especially medical professionals), the choice of the group to be questioned is consequential. Further research needs to focus on validity and applicability of the identified methods.

Ginkgo biloba in Alzheimer's disease: a systematic review.

This systematic review determines the benefit of treatment with Ginkgo biloba (Ginkgo) in Alzheimer's disease (AD) concerning patient-relevant outcomes. Bibliographic databases, clinical trial and study result registries were searched for randomized controlled trials (RCTs) in patients with AD (follow-up ≥16 weeks) comparing Ginkgo to placebo or a different treatment option. Manufacturers were asked to provide unpublished data. If feasible, data were pooled by meta-analysis. Six studies were eligible; overall, high heterogeneity was shown for most outcomes, except safety aspects. Among studies administering high-dose Ginkgo (240 mg), all studies favour treatment though effects remain heterogeneous. In this subgroup, a benefit of Ginkgo exists for activities of daily living. Cognition and accompanying psychopathological symptoms show an indication of a benefit. A harm of Ginkgo is not evident. An estimation of the effect size was not possible for any outcome. Further evidence is needed which focuses especially on subgroups of AD patients.