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Published in:

01-03-2009

The FAP self-concept scale (adult form)

Authors: Mary Jane Esplen, Noreen Stuckless, Terri Berk, Kate Butler, Steve Gallinger

Published in: Familial Cancer | Issue 1/2009

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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Bulow S, Berk T, Neale K (2006) The history of familial adenomatous polyposis. Fam Cancer 5:213–220. doi:10.1007/s10689-005-5854-0 PubMedCrossRef

Church J, Simmang C, Standards Task Force, American Society of Colon and Rectal Surgeons, Collaborative Group of the Americas on Inherited Colorectal Cancer, Standards Committee of the American Society of Colon and Rectal Surgeons (2003) Practice parameters for the treatment of patients with dominantly inherited colorectal cancer (familial adenomatous polyosis and hereditary nonpolyposis colorectal cancer). Dis Colon Rectum 46(8):1001–1012. doi:10.1007/s10350-004-7273-y

Miller H, Bauman L, Friedman D, Decosse J (1986–1987) Psychosocial adjustment of familial polyposis patients and participation in a chemoprevention trial. Int J Psychiatry Med 16(3):211–230CrossRef

Rowley PT (2004) Screening for an inherited susceptibility to colorectal cancer. Genet Test 8(4):421–430. doi:10.1089/gte.2004.8.421 PubMedCrossRef

Berk T, Bapat B, Gallinger S, Cohen Z (1999) Negative genetic test result in familial adenomatous polyposis: clinical screening implications. Dis Colon Rectum 42(3):307–312. doi:10.1007/BF02236343 PubMedCrossRef

McGrath D, Spigelman AD (2004) In the beginning there was colectomy; current surgical options in familial adenomatous polyposis. Hereditary Cancer Clin Pract 2(4):153–160CrossRef

Lynch P (2005) Current approaches in familial colorectal cancer: a clinical perspective. J Natl Compr Canc Netw 4(4):421–430

Esplen M, Berk T, Butler K, Gallinger S, Cohen Z, Trinkhaus M (2004) Quality of life in adults diagnosed with familial adenomatous polyposis and desmoid tumor. Dis Colon Rectum 47(5):687–696. doi:10.1007/s10350-003-0121-7 PubMedCrossRef

Rozen P, Macrae F (2006) Familial adenomatous polyposis: the practical applications of clinical and molecular screening. Fam Cancer 5:227–235. doi:10.1007/s10689-005-5674-2 PubMedCrossRef

10.

Codori A, Petersen G, Boyd P, Brandt J, Giardiello F (1996) Genetic testing for cancer in children: short-term psychological effects. Arch Pediatr Adolesc Med 150(11):1131–1138PubMed

11.

Michie S, Bobrow M, Marteau TM (2001) Predictive genetic testing in children and adults: a study of emotional impact. J Med Genet 38(8):519–526. doi:10.1136/jmg.38.8.519 PubMedCrossRef

12.

Codori A, Zawacki KL, Petersen GM, Miglioretti DL, Bacon JA, Trimbath JD et al (2003) Genetic testing for hereditary colorectal cancer in children: long-term psychological effects. Am J Med Genet A 116(2):117–128. doi:10.1002/ajmg.a.10926 CrossRef

13.

DudokdeWit AC, Tibben A, Duivenvoorden HJ, Niermeijer MF, Passchier J (1998) Predicting adaptation to presymptomatic DNA testing for late onset disorders: who will experience distress? Rotterdam Leiden genetics workgroup. J Med Genet 35(9):745–754PubMedCrossRef

14.

Douma K, Aaronson, N, Vasen, H, Bleiker, E. (2008) Psychosocial issues in genetic testing for familial adenomatous polyposis: a review of the literature. Psycho-Oncology (online)

15.

Andrews L, Mireskandari S, Jessen J, Thewes B, Solomon M, Macrae F, Meiser B (2007) Impact of familial adenomatous polyposis on young adults: quality of life outcomes. Dis Colon Rectum 50(7):10

16.

Stein KF (1995) Schema model of the self-concept. Image J Nurs Sch 27:187–193. doi:10.1111/j.1547-5069.1995.tb00857.x PubMedCrossRef

17.

Devins G, Mandin H, Beanlands H, Paul LC (1997) Psychosocial impact of illness intrusiveness moderated by self-concept and age in end-stage renal disease. Health Psychol 16(6):529–538. doi:10.1037/0278-6133.16.6.529 PubMedCrossRef

18.

Beanlands H, Lipton J, McCay E, Schimmer A, Elliiot M, Messner H et al (2003) Self-concept as a “BMT patient”, illness intrusiveness, and engulfment in allogeneic bone marrow transplant recipients. J Psychosom Res 55:419–425. doi:10.1016/S0022-3999(03)00509-9 PubMedCrossRef

19.

Markel H (1992) The stigma of disease: implications of genetic screening. Am J Med 93:209–215. doi:10.1016/0002-9343(92)90052-D PubMedCrossRef

20.

Giarelli E (2006) Self-surveillance for genetic predisposition to cancer: behaviors and emotions. Oncol Nurs Forum 33(2):221–231. doi:10.1188/06.ONF.221-231 PubMedCrossRef

21.

McConkie-Rosell A, DeVillis BJ (2000) Threat to parental role: a possible mechanism of altered self-concept related to carrier knowledge. J Genet Couns 9(4):285–302. doi:10.1023/A:1009428328837 CrossRef

22.

Lynch HLC (1996) Psychological aspects of familial breast cancer. In: Calvo F, Crepin M, Macdelenat H (eds) Breast cancer: advances in biology and therapeutics. John Libbey Eurotext 11-8

23.

Schild S (1981) Social and psychological issues in genetic counseling. Springfield, Charles C. Thomas

24.

Read C, Perry DJ, Duffy ME (2005) Design and psychometric evaluation of the psychological adaptation to genetic information scale. J Nurs Scholarsh 37(3):203–208PubMedCrossRef

25.

Schild S (1966) The challenging opportunity for social workers in genetics. Soc Work 11:22

26.

Lim JM, Price M, Bennett B, Butow P, kConFab Psychosocial Group (2004) Short-and long-term impact of receiving genetic mutation results in women at increased risk for hereditary breast cancer. J Genet Couns 13(2):115–133. doi:10.1023/B:JOGC.0000018822.56297.a6 PubMedCrossRef

27.

Hallowell N, Foster C, Eeles R, Arden-Jones A, Watson M (2004) Accomodating risk: responses to BRCA1/2 genetic testing of women who have had cancer. Soc Sci Med 59:553–565. doi:10.1016/j.socscimed.2003.11.025 PubMedCrossRef

28.

Esplen M, Hunter J, Leszcz M, Warner E, Narod S, Metcalfe K et al (2004) A multi-centre phase II study of supportive-expressive group therapy for women with BRCA1 and BRCA2 mutations. Cancer 101(10):2327–2340. doi:10.1002/cncr.20661 PubMedCrossRef

29.

Andrews L, Mireskandari S, Jessen J, Thewes B, Solomon M, Macrae F et al (2006) Impact of familial adenomatous polyposis on young adults: attitudes toward genetic testing, support, and information needs. Genet Med 8(11):697–703. doi:10.1097/01.gim.0000245574.75877.b9 PubMedCrossRef

30.

McGaughey A (2006) Body image after bilateral prophylactic mastectomy: an integrative literature review. J Midwifery Womens Health 51(6):41–49. doi:10.1016/j.jmwh.2006.07.002 CrossRef

31.

Hallowell N, Mackay J, Richards M, Gore M, Jacobs I (2004) High-risk premenopausal women’s experiences of undergoing prophylactic oophorectomy: a descriptive study. Genet Test 8(2):148–156. doi:10.1089/gte.2004.8.148 PubMedCrossRef

32.

Foster C, Eeles R, Arden-Jones A, Moynihan C, Watson M (2004) Juggling roles and expectations: dilemmas faced by women talking to relatives about cancer and genetic testing. Psychol Health 19(4):439–455)

33.

van Oostrom I, Meijers-Heijboer H, Duivenvoorden H, Broker-Vriends A, van Asperen C, Sijmons R, Seynaeve C, Van Gool AR, Klijn J, Tibben A (2007) Comparison of individuals opting for BRCA1/2 or HNPCC genetic susceptibility testing with regard to coping, illness perceptions, illness experiences, family system characteristics and hereditary cancer distress. Patient Educ Couns 65(1):58–68. doi:10.1016/j.pec.2006.05.006 PubMedCrossRef

34.

Markus H, Sentis K (1982) The self in social information processing. In: Suls J (ed) Social psychological perspectives on the self. Erlbaum, Hillsdale, NJ

35.

Markus H, Wurf E (1987) The dynamic self-concept: a social psychological perspective. In: Rosenweig MR (ed) Annual review of psychology, pp 299–337

36.

Hastie R (1981) Schematic principles in human memory. In: Higgins ET (ed) Social cognition. The Ontario Symposium Hillsdale, Lawrence Erlbaum, NJ

37.

Markus H, Hamill R, Sentis K (1987) Thinking fat: self-schemas for body weight and the processing of weight relevant information. J Appl Soc Psychol 17:50–71. doi:10.1111/j.1559-1816.1987.tb00292.x CrossRef

38.

Kendzierski D (1988) Self-schemata and exercise. Basic Appl Soc Psych 9(1):45–59. doi:10.1207/s15324834basp0901_4 CrossRef

39.

Stein KF, Markus H (1990) The self-structure: an assessment of the organizational properties. In Paper presented at the American Psychological Association (ed). Boston, MA

40.

Garcia T, Pintrich P (1994) Regulating motivation and cognition in the classroom: the role of self-schemas and self-regulatory strategies. In self-regulation of learning and performance. Issues and Educational Applications Lawrence Erlbaum, Hillsdale, NJ

41.

Baumeister R (1998) The self. In: Gilbert DFS, Lindzey G (eds) The handbook of social psychology. Oxford University Press, New York

42.

Markus H, Nurius P (1986) Possible selves. Am Psychol 41:954–969. doi:10.1037/0003-066X.41.9.954 CrossRef

43.

Markus H, Cross S, Wurf E (1990) The role of the self-system in competence. In: Sternberg R, Kolligan J (eds): Competence Considered Yale University Press, New Haven, CT

44.

Wylie R (1974) The self-concept. A review of methodological considerations and measuring instruments. In Revised Edition (ed). University of Nebraska Press, Lincoln, Nebraska

45.

Soravia C, Cohen Z (2005) Familial adenomatous polyposis. In: Fazio VN, Church JM, Delaney CP (eds) Current therapy in colon and rectal surgery. Elsevier Mosby, St. Louis

46.

Church J, Lowry A, Simmang C (2001) Practice parameters for the identification and testing of patients at risk for dominantly inherited colorectal cancer-supporting documentation. Dis Colon Rectum 44(10):1403–1412. doi:10.1007/BF02234588 CrossRef

47.

American Gastroenterological Association Medical Position Statement (2001) Hereditary colorectal cancer and genetic testing. Gastroenterology 121:195–197

48.

Jackson D (1970) A sequential system for personality scale development. In: Spielberger CD (ed) Current topics in clinical and community psychology. Academic Press, New York

49.

Stuckless N, Goranson R (1992) The vengeance scale: development of a measure of attitudes toward revenge. J Soc Behav Pers 7:25–42

50.

Couch LL, Adams JM, Jones WH (1996) The assessment of trust orientation. J Pers Assess 21:305–323. doi:10.1207/s15327752jpa6702_7 CrossRef

51.

Gold BT (1996) Enviousness and its relationship to maladjustment and psychopathology. Pers Individ Dif 21:311–321. doi:10.1016/0191-8869(96)00081-5 CrossRef

52.

Reynolds WM (1982) Development of reliable and valid short forms of the Marlowe-Crowne social desirability scale. J Clin Psychol 38:119–125. doi:10.1002/1097-4679(198201)38:1<119::AID-JCLP2270380118>3.0.CO;2-I

53.

Horowitz MJ, Wilner N, Alvarez W (1979) Impact of events scale: a measure of subjective stress. Psychosom Med 41:209–218PubMed

54.

Sundin E, Horowitz MJ (2002) Impact of event scale: psychometric properties. Br J Psychiatry 180:205–209. doi:10.1192/bjp. 180.3.205 PubMedCrossRef

55.

Rosenberg M (1965) Society and the adolescent self image. Princeton University Press, Princeton, NJ

56.

Marks IM, Mathews AM (1978) Brief standard self-rating for phobic patients. Behav Res Ther 17:263–267. doi:10.1016/0005-7967(79)90041-X CrossRef

57.

Higgins ET, Bond R, Klein R, Strauman T (1986) Self-discrepancies and emotional vulnerability: how magnitude accessibility, and type of discrepancy influence affect. J Pers Soc Psychol 51:5–15. doi:10.1037/0022-3514.51.1.5 PubMedCrossRef

58.

Briggs SR, Cheek JM (1986) The role of factor analysis in the development and evaluation of personality scales. J Pers 54:106–148. doi:10.1111/j.1467-6494.1986.tb00391.x CrossRef

59.

Walsh W, Betz N (1985) Tests and assessments. Prentice Hall Inc, New Jersey

60.

Baum A, Friedman AL, Zakowski SG (1997) Stress and genetic testing for disease risk. Health Psychol 16(1):8–19. doi:10.1037/0278-6133.16.1.8 PubMedCrossRef

61.

Devins G, Bezjak A, Mah K, Loblaw D, Gotowiec A (2006) Context moderates illness-induced lifestyle disruptions across life domains: a test of the illness intrusiveness theoretical framework in six common cancers. Psychooncology 15(3):221–233. doi:10.1002/pon.940 PubMedCrossRef

62.

Cantor N, Kihlstrom JF (1987) Personality and social intelligence. Prentice Hall, Englewood Cliffs, NJ

63.

Josephs R, Markus H, Tafarodi R (1992) Gender and self-esteem. J Pers Soc Psychol 63:391–402. doi:10.1037/0022-3514.63.3.391 PubMedCrossRef

64.

Fitts WH (1964) Tennessee self concept scale: manual. Nashville, Tenn Counselor Recordings and Tests, Department of Mental Health, Tennessee

65.

Pelham BW, Swann WB (1989) From self-conceptions to self-worth: on the sources and structure of global self-esteem. J Pers Soc Psychol 57:672–680. doi:10.1037/0022-3514.57.4.672 PubMedCrossRef

66.

Stein KF, Roeser R, Markus H (1998) Self-schemas and possible selves as predictors and outcomes of risky behaviors in adolescents. Nurs Res 47(2):96–106. doi:10.1097/00006199-199803000-00008 PubMedCrossRef

67.

Lazarus RS, Folkman S (1984) Stress, appraisal and coping. Springer, New York

68.

Curbow B, Somerfield M, Legro M, Sonnega J (1990) Self-concept and cancer in adults: theoretical and methodological issues. Soc Sci Med 31(2):115–128. doi:10.1016/0277-9536(90)90053-U PubMedCrossRef

69.

Beck AT (1983) Cognitive theory of depression. In: Clayton P (ed) Treatment of depression: old controversies and new approaches. Raven, New York

70.

Beck AT, Emery G, Greenberg RL (1985) Anxiety disorders and phobias: a cognitive perspective. Basic, New York

Title: The FAP self-concept scale (adult form)
Authors: Mary Jane Esplen
Noreen Stuckless
Terri Berk
Kate Butler
Steve Gallinger
Publication date: 01-03-2009
Publisher: Springer Netherlands
Published in: Familial Cancer / Issue 1/2009
Print ISSN: 1389-9600
Electronic ISSN: 1573-7292
DOI: https://doi.org/10.1007/s10689-008-9204-x

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