Consumer health information needs: A systematic review of instrument development

Abstract Identifying health information needs is an important part of user-centered health information behavior research. Qualitative information behavior studies yield deep insights but have limited generalizability. Quantitative studies using questionnaire instruments offer better generalizability, but only if the instruments are properly developed and validated. A systematic review of the questionnaire instruments used in quantitative studies of health information needs was carried out, focusing on whether the instruments were appropriately developed and validated (including content validity, internal consistency, structural validity, construct validity, and floor and ceiling effects). The questionnaire instruments were grouped into two types: those that assess consumer health information needs, and those that assess patient needs that impact patient quality of life (including health information needs). One hundred and seventeen validation studies for these instruments were identified in the literature and evaluated for their methodological quality and psychometric properties. It was found that, overall, the two groups of questionnaire instruments were not well developed: only structural validity, internal consistency tests and content validity analysis were performed in about 50 percent of them; other types of validations were missing in most of them. Even for the instruments with some validation tests performed, they were usually not designed based on relevant theory to support content validity, lacked specifications for handling missing data; and had inappropriate factor analysis in the structural validity test. Instruments used for assessing patient needs were found to perform better in testing construct validity and evaluating floor and ceiling effects. Practical recommendations include the use of information needs theories and the results of qualitative studies to inform instrument development, as well as the advice on conducting more rigorous validations.