Development of a scale for assessing respondents' perceptions of health research questionnaires (the REP-HQ Scale)

To develop a scale for assessing Respondents' Perceptions of Health Research Questionnaires (the REP-HQ Scale) and test this scale psychometrically.

A scale was drawn, based on detailed content analysis of patients' free comments, which were collected prospectively in a 2-year cohort study (n=228). The questionnaire corresponding to this scale was subsequently completed by a cohort of female BRCA1/2 carriers/noncarriers not affected by cancer, who had been followed up for 5 years since test result disclosure (n=246). Principal component analysis, Cronbach's alpha coefficient, and Pearson's correlations were used in the statistical analyses.

The perceived effects that emerged from the respondents' responses were analyzed and classified under the headings: "Useful medical information," "Usefulness of research," and "Labeling intrusion." Cronbach's alpha coefficients on the three dimensions were 0.75, 0.64, and 0.56, respectively. Carriers obtained lower scores than noncarriers on the first dimension (P=0.005) and on the overall score (P=0.002).

The REP-HQ scale is the first generic tool to be developed for assessing participants' perceptions about the effects of health research questionnaires. Further testing is now required to confirm the validity of the findings obtained here by applying this tool in other settings.