Review ArticleSummaries of findings, descriptions of interventions, and information about adverse effects would make reviews more informative
Introduction
In an “evidence-informed patient choice,” a shared decision is taken after the person concerned has been given “research-based information about the effectiveness (likely outcomes, both benefits and risks) of at least two alternative interventions (which may include the option of no intervention)” [1].
Information that supports an evidence-informed choice should include reliable and unbiased information that covers treatments and outcomes that are of relevance to the patient in a language that the patient understands. But translating health care research into patient information presents a number of challenges.
A decade ago, the sheer volume of research as well as its varying quality would have represented one of the greatest challenges to this type of work. The development of systematic reviews represents a solution to these issues. Systematic reviews synthesize results of primary studies to answer a specific research question by using strategies to limit bias and random error [2]. Although the use of systematic reviews as a basis for the development of patient information is a good place to start, it may still pose a number of problems, either due to the reviews themselves or to the primary studies on which they are based.
The Backinfo project (www.backinfo.no) is one of a number of efforts to make the results of Cochrane reviews more accessible to people in decision-making situations by extracting and presenting key information [3]. BackInfo is an information Web site that presents the results of systematic reviews to Norwegian back pain sufferers about the effects of treatments for back pain.
Prior to the development of BackInfo's contents, one of us (C.G.) conducted a qualitative study of back pain sufferers' information needs [4], which showed that back pain sufferers wanted information about different treatment options, their possible benefits and harms, and the likelihood of these benefits and harms. Patient information guidelines [5], [6] and checklists (The DISCERN on the Internet Project; www.discern.org.uk/; 2005) recommend similar contents. When extracting and presenting this information from Cochrane reviews we aimed to achieve the following goals:
- 1.
Relevance: we excluded information regarded as not patient-relevant and presented information that was as specific as possible to specific patient subgroups and treatment types.
- 2.
Consistency: to reduce confusion and facilitate comparison across treatments, we presented information using a standardized format, and aimed for consistency with regard to population type, outcomes, and presentation of effect size.
- 3.
Comprehension: we chose language and presentation styles with the aim of increasing users' understanding of the material.
In this article we describe the challenges we encountered when aiming to achieve these goals. The implications of these challenges for trialists, review authors, and review groups are discussed.
Section snippets
Methods
The BackInfo team was made up of an international group of people with backgrounds in medicine, epidemiology, social anthropology, linguistics, physiotherapy, surgery, and nursing. One team member is also the coordinator of the Cochrane Back Group.
Selecting and creating comparisons
Eighteen reviews from the Cochrane Back Group and one review from the Cochrane Pregnancy and Childbirth Group covering 24 back pain treatments were used in BackInfo.
The reviews included 204 comparisons. The identification of comparisons in the reviews was complicated by the fact that comparisons were sometimes described differently in different parts of the reviews. It was also frequently not clear in reviews whether control groups received a placebo, usual care or “no treatment”; and what the
Discussion
A number of reasons lie behind our choice of Cochrane reviews as our primary source of research information. First, as contributors to the Cochrane Collaboration one of our motivations was to develop methods for making Cochrane reviews more accessible to the general public. Second, Cochrane reviews have been found to be of better quality than other published reviews on average, although they also have shortcomings. Third, and most importantly, Cochrane reviews are regularly updated and provide
Conclusions
By systematically selecting comparisons and outcomes, rephrasing and reframing outcome measures, and standardizing the presentation of treatment effects, we aimed to increase the usability and accessibility of the results of Cochrane reviews. One problem with this approach is that outcomes may already have been rephrased, reframed, and reanalyzed by the review authors after their selection from the primary studies. Because of the lack of information in many reviews about how outcomes were
Acknowledgments
This project was financed with the aid of EXTRA funds from the Norwegian Foundation for Health and Rehabilitation. The authors would also like to thank Timmo Koy and Eva Schonstein for their contributions to the BackInfo project.
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