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The FAP self-concept scale (adult form)

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Abstract

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.

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Acknowledgements

This research was supported by a grant received from the National Cancer Institute of Canada (# 13016) with funds from the Canadian Cancer Society. The first author is a recipient of a career scientist award from the Canadian Institutes of Health Research (CIHR) and the Ontario Women’s Health Council. We would also like to express our gratitude to all of the patients who participated in the study and the experts who provided feedback during the scale’s development.

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Authors and Affiliations

  1. Behavioral Sciences and Health Research Division, Toronto General Research Institute, University Health Network, E-9-242A, 200 Elizabeth Street, Toronto, ON, Canada, M5G 2C4

    Mary Jane Esplen & Kate Butler

  2. Department of Psychiatry, Faculty of Medicine, University of Toronto, Toronto, ON, Canada

    Mary Jane Esplen

  3. Department of Psychology, York University, Toronto, ON, Canada

    Noreen Stuckless

  4. Dr. Zane Cohen Digestive Diseases Clinical Research Centre, Familial GI Cancer Registry, Mount Sinai Hospital, Toronto, ON, Canada

    Mary Jane Esplen, Terri Berk & Steve Gallinger

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  1. Mary Jane Esplen
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Corresponding author

Correspondence to Mary Jane Esplen.

Appendix 1: FAP self-concept scale (adult version)

Appendix 1: FAP self-concept scale (adult version)

Instructions: The following statements have been made by people with Familial Adenomatous Polyposis (FAP). We would like to know how much you AGREE or DISAGREE with EACH of these statements. Please indicate your answer by circling the appropriate number from 1 to 8 for not applicable

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Esplen, M.J., Stuckless, N., Berk, T. et al. The FAP self-concept scale (adult form). Familial Cancer 8, 39–50 (2009). https://doi.org/10.1007/s10689-008-9204-x

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