The Feelings About genomiC Testing Results (FACToR) Questionnaire: Development and Preliminary Validation

The purpose of this study was to develop a brief instrument, the Feelings About genomiC Testing Results (FACToR), to measure the psychosocial impact of returning genomic findings to patients in research and clinical practice. To create the FACToR, we modified and augmented the Multidimensional Impac...

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Published inJournal of genetic counseling Vol. 28; no. 2; p. 477
Main Authors Li, Meng, Bennette, Caroline S, Amendola, Laura M, Ragan Hart, M, Heagerty, Patrick, Comstock, Bryan, Tarczy-Hornoch, Peter, Fullerton, Stephanie M, Regier, Dean A, Burke, Wylie, Trinidad, Susan B, Jarvik, Gail P, Veenstra, David L, Patrick, Donald L
Format Journal Article
LanguageEnglish
Published United States 01.04.2019
Subjects
Adult
Female
Focus Groups
Genetic Testing
Genomics
Humans
Male
Middle Aged
Psychometrics
Reproducibility of Results
Surveys and Questionnaires
Genomic testing
Psychological impact
Instrument development and validation
Colorectal cancer
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Summary:The purpose of this study was to develop a brief instrument, the Feelings About genomiC Testing Results (FACToR), to measure the psychosocial impact of returning genomic findings to patients in research and clinical practice. To create the FACToR, we modified and augmented the Multidimensional Impact of Cancer Risk Assessment (MICRA) questionnaire based on findings from a literature review, two focus groups (N = 12), and cognitive interviews (N = 6). We evaluated data from 122 participants referred for evaluation for inherited colorectal cancer or polyposis from the New EXome Technology in (NEXT) Medicine Study, an RCT of exome sequencing versus usual care. We assessed floor and ceiling effects of each item, conducted principal component analysis to identify subscales, and evaluated each subscale's internal consistency, test-retest reliability, and construct validity. After excluding items that were ambiguous or demonstrated floor or ceiling effects, 12 items forming four distinct subscales were retained for further analysis: negative emotions, positive feelings, uncertainty, and privacy concerns. All four showed good internal consistency (0.66-0.78) and test-retest reliability (0.65-0.91). The positive feelings and the uncertainty subscales demonstrated known-group validity. The 12-item FACToR with four subscales shows promising psychometric properties on preliminary evaluation in a limited sample and needs to be evaluated in other populations.
ISSN:1573-3599
DOI:10.1007/s10897-018-0286-9