Development of a scale for assessing respondents' perceptions of health research questionnaires (the REP-HQ Scale).
OBJECTIVE
To develop a scale for assessing Respondents' Perceptions of Health Research Questionnaires (the REP-HQ Scale) and test this scale psychometrically.


METHODS
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.


RESULTS
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).


CONCLUSIONS
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.
Institut National de la Santé et de la Recherche Médicale, UMR912 "Health Economy, Social Sciences & Medical Information Processing" (SESSTIM), 232, Boulevard de Sainte-Marguerite, 13009 Marseille, France. anne-deborah.bouhnik@inserm.fr
Anne-Déborah
AD
Bouhnik
Roxane
R
Fabre
Michel
M
Dorval
Julien
J
Mancini
Emmanuelle
E
Mouret-Fourme
Catherine
C
Nogues
Claire
C
Julian-Reynier
D000328:Adult; D000368:Aged; D001294:Attitude to Health; D035843:Biomedical Research; D005260:Female; D005602:France; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005820:Genetic Testing; D006801:Humans; D008137:Longitudinal Studies; D008875:Middle Aged; D025341:Principal Component Analysis; D011594:Psychometrics; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires