Inaccessible Novel Questionnaires in Published Medical Research: Hidden Methods, Hidden Costs

Abstract

and searched portable document format (PDF) versions of the studies for the complete questionnaire or a Uniform Resource Locator (URL) providing access to the questionnaire. When the questionnaire was not provided in the publication or a published URL, the authors requested it from the corresponding author in writing up to three times over a 6-week period. Of 93 publications with novel questionnaires, four printed the questionnaire in the article and three provided online access. Corresponding authors failed to provide questionnaires for 37 of 81 (46%) studies. Novel questionnaires used in published research are frequently not available to readers or researchers. Policies that improve access to novel questionnaires will allow better assessment of study results, reduce duplicated efforts, and improve authorship attribution for questionnaire design. data collection; methods; peer review; questionnaires; research design Editor's note: An invited commentary on this article is published on page 1145.Because inaccessible questionnaires hinder the evaluation and interpretation of survey results (1-3), researchers have called for better access to novel questionnaires used in published research (4-6). Finding no previous studies of novel questionnaire availability, we systematically examined access to novel questionnaires used in research published in three prominent medical journals. Printed portable document format (PDF) versions of putative qualifying articles were examined by two investigators who independently extracted methods and results to determine which articles met inclusion criteria, including original research with a main outcome that reported results from a novel questionnaire. Questionnaires generally were classified into one of three categories. Many manuscripts stated that the questionnaires were developed for the purpose of the study; these were deemed novel. The second category included published, validated instruments with proper names, for example, The Edinburgh Postnatal Depression Scale and the Behavioral Risk Factor Surveillance System. The third category included questionnaires that were not clearly in either of the first two categories and required further investigation. In these instances, the questionnaires' references were reviewed to determine whether they cited a previously published questionnaire (nonnovel) or publications that supported the design of the study's questionnaire (novel). PDF versions of qualifying studies were manually searched independently by two investigators for publication of a complete questionnaire or publication of a Uniform Resource Locator (URL) providing access to the questionnaire. MATERIALS AND METHODS A MEDLINE search (USDuring the summer of 2004, requests for questionnaires were sent to unique corresponding authors of studies with unpublished novel questionnaires. Only one questionnaire was requested from each author (when the same corresponding author represented more than one publication, the questionnaire from only one randomly selected publication meeting ...

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