Using Cochrane reviews to develop consumer information - choosing and presenting outcomes

Article type
Authors
Glenton C, Nilsen E, Kho M, Pennick V, Underland V, Koy T, Vist G
Abstract
Background: BackInfo (www.rygginfo.no) is a collaboration between the Norwegian Back Pain Association and the Norwegian Centre for Health Services. BackInfo aims to present reliable, relevant, and accessible information to consumers about the effects of back pain treatment. The main sources of this information are the Cochrane Back Group s systematic reviews.

By providing information about the outcomes used in trials, consumers can judge for themselves whether these outcomes are of interest, and gaps or nuances in research results can be highlighted.
Typically, reviews include trials with many different outcomes, some of which overlap, are of questionable relevance, are imprecise, or hard to understand. How can we give consumers a clear understanding of relevant research results while avoiding information overload?

Objectives: To extract outcomes from the Cochrane Back Group reviews that are relevant to back pain sufferers and to present them in a manner that is understandable and eases comparison between treatments.

Methods: Three team members, all of who were health professionals, identified outcomes in each review that they regarded as relevant to consumers. Excluded and included outcomes were discussed and approved by other team members.

Two team members, neither of who were health professionals, re-phrased included outcomes that they considered hard to understand. Outcomes that were similar were merged. These changes were discussed and approved by other team members.

Results: Excluded outcomes included surrogate outcomes (e.g. trunk flexion ) and outcomes with vague measurement time points (e.g. short term .) Typical outcomes that were included were pain , functional status and return to work .

Adverse events were also included as outcomes, although this information was only covered by a few of the reviews. This lack of information was noted in the consumer information.

Where outcomes were rated by patients as well as by the practitioner or an independent observer, patient-rated outcomes were chosen. Where outcomes were measured at several points in time, a selection of these time points was made, guided by whether participants had acute or chronic pain.

Many outcomes were re-phrased, for example, physical disability score became ability to perform everyday activities . Many outcomes were unclear. Outcomes for surgery included unchanged or worse condition ; poor outcome ; poor or bad result ; failure and no success . These were all renamed no success .

Conclusions: BackInfo s aim has been to make the results of Cochrane reviews more accessible, more relevant, and easier to compare. As with all selection and translation processes, there is a risk that we have distorted these results. This risk increases when the outcomes used in trials have already been merged or re-phrased by reviewers. Outcome vagueness has been a challenge; at times it is difficult to discern if this is attributable to the primary studies or the review itself. This work supports the call by Deyo (1998) for trialists to adopt a standardized set of outcomes.

Backinfo is currently being refereed by clinicians and consumers and by Cochrane Back Group reviewers.

References: 1. Deyo RA et al. Outcome measures for low back pain research. Spine. 1998;23(18):2003-2009.