The FAP self-concept scale (adult form)

Familial Adenomatous Polyposis (FAP) is a dominantly inherited disorder characterized by multiple colorectal adenomas associated with a 100% risk of early colorectal cancer. A diagnosis of FAP may alter a person’s self-concept, which in turn may impact on an individual’s quality of life and screening behaviors. Purpose The purpose of the study was to develop and validate a scale for measuring the impact of being diagnosed with FAP on an individual’s self-concept. Methods The study was conducted in two phases: Phase (1) Item generation and refinement, and Phase (2) Scale selection and initial validation. Adults age 18 and older. Results During Phase 1, scale items were generated through individual interviews and two professionally led focus groups. In Phase 2, 132/200 (66%) participants completed the 41-item candidate scale and a battery of standardized validating measures. The mean age of participants was 48 (12.2) years (range 21–74), 57% were female, 72% were married and 69% were Anglo-Canadian. The study resulted in a 23-item valid and reliable scale, Cronbach’s α = .92, inter—item correlation = .34, total variance explained = 52.6%, low correlation with social desirability, and expected relationships with the other validating measures. Factor analysis resulted in three subscales representing the dimensions of stigma, self-esteem and mastery. Conclusions A promising new scale for measuring self-concept among adults with FAP has been developed. The instrument has potential use as a clinical screening tool and a research measure that will contribute to the empirical and theoretical literature.