Mary Jane Esplen1, Noreen Stuckless, Terri Berk, Kate Butler, Steve Gallinger. 1. Behavioral Sciences and Health Research Division, Toronto General Research Institute, University Health Network, E-9-242A, 200 Elizabeth Street, Toronto, ON, Canada. mesplen@uhnres.utoronto.ca
Abstract
UNLABELLED: 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 alpha = .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.
UNLABELLED: 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 alpha = .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.
Authors: Iris van Oostrom; Hanne Meijers-Heijboer; Hugo J Duivenvoorden; Annette H J T Bröcker-Vriends; Christi J van Asperen; Rolf H Sijmons; Caroline Seynaeve; Arthur R Van Gool; Jan G M Klijn; Aad Tibben Journal: Patient Educ Couns Date: 2006-07-26
Authors: M J Esplen; N Stuckless; S Gallinger; M Aronson; H Rothenmund; K Semotiuk; J Stokes; C Way; J Green; K Butler; H V Petersen; J Wong Journal: Clin Genet Date: 2011-10-03 Impact factor: 4.438