Top

Published in:

01-10-2009 | Original Research

Psychosocial Impact of Familial Adenomatous Polyposis on Young Adults: A Qualitative Study

Authors: Shab Mireskandari, Jennifer Sangster, Bettina Meiser, Belinda Thewes, Claire Groombridge, Allan Spigelman, Lesley Andrews

Published in: Journal of Genetic Counseling | Issue 5/2009

Abstract

The aim of this study was to explore in detail the psychosocial impact of either having familial adenomatous polyposis (FAP) or being at risk for FAP amongst young adults. In-depth interviews were conducted with eleven individuals aged 18–35 with a clinical or genetic diagnosis of, or at risk of developing FAP. While being at risk did not seem to have a major psychosocial impact upon clinically unaffected participants, clinically affected individuals discussed a number of major stressors including issues in relation to changes in body image and physical functioning as a result of surgery, concerns about discussing FAP with new partners, difficulties in relation to childbearing decision-making, and impact on employment. Genetic counseling was described as being highly effective in providing support, but most participants were not aware of any other support services. Providing longer-term support through ongoing genetic counseling appears necessary to adequately address the ongoing challenges faced by young adults who are dealing with FAP.

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

Andrews, L., Mireskandari, S., Jessen, J., Thewes, B., Solomon, M., MacCrae, F., et al. (2007). Impact of familial adenomatous polyposis on young adults: quality of life outcomes. Diseases of the Colon and Rectum, 50(9), 1306–1315. doi:10.1007/s10350-007-0259-9.PubMedCrossRef

Belchetz, L. A., Berk, T., Bapat, B., Cohen, Z., & Gallinger, S. (1996). Changing causes of mortality in patients with familial adenomatous polyposis. Diseases of the Colon and Rectum, 39, 384–387. doi:10.1007/BF02054051.PubMedCrossRef

Berk, T., Bapat, B., & Stern, H. (1993). Screening management, and surveillance for families with familial adenomatous polyposis. Gastrointestinal Endoscopy, 3, 725–736.

Bess, M., Adson, M., Elvebeck, L., & Moertel, C. (1980). Rectal cancer following colectomy for polyposis. Archives of Surgery, 115, 460–467.PubMed

Bisgaard, M., Fenger, K., Bulow, S., Niebuhr, E., & Mohr, J. (1994). Familial adenomatous polyposis (FAP): frequency, penetrance, and mutation rate. Human Mutation, 3, 121–125. doi:10.1002/humu.1380030206.PubMedCrossRef

Cassileth, B., Lusk, E., Strouse, T., Miller, D., Brown, L., Cross, P., et al. (1984). Psychosocial status in chronic illness. A comparative analysis of six diagnostic groups. The New England Journal of Medicine, 311(8), 506–511.PubMedCrossRef

Codori, A., Petersen, G. M., Boyd, P. A., Brandt, J., & Giardello, F. M. (1996). Genetic testing for cancer in children: short-term psychological effect. Archives of Pediatrics & Adolescent Medicine, 150, 1131–1138.

Codori, A., Zawacki, K., Petersen, G., Miglioretti, D., Bacon, J., Trimbarth, J., et al. (2003). Genetic testing for hereditary colorectal cancer in children: long-term psychological efects. American Journal of Medical Genetics, 116A, 117–128. doi:10.1002/ajmg.a.10926.PubMedCrossRef

Freeman, E. (1987). Interaction of pregnancy, loss and developmental issues in adolescents. Journal of Contemporary Social Work, 68(1), 38–46.

Giardiello, F., Brensinger, J., & Petersen, G. (2001). AGA technical review on hereditary colorectal cancer and genetic testing. Gastroenterology, 121(1), 198–213.PubMedCrossRef

Groden, J., Thliveris, A., Samowitz, W., Carlson, M., Gelbert, L., Albertsen, H., et al. (1991). Identification and characterization of the adenomatous polyposis coli gene. Cell, 66, 589–600. doi:10.1016/0092-8674(81)90021-0.PubMedCrossRef

Knudsen, A., & Bulow, S. (2001). Desmoid tumour in familial adenomatous polyposis: a review of literature. Familial Cancer, 1, 111–119. doi:10.1023/A:1013841813544.PubMedCrossRef

Lerman, C., Kash, K., & Stefanek, M. (1994). Younger women at increased risk for breast cancer: Perceived risk, psychological well-being and surveillance behaviour. Journal of the National Cancer Institute, Monographs, (16), 171–176.

Lynch, H. T., & de la Chapelle, A. (2003). Hereditary colorectal cancer. The New England Journal of Medicine, 348, 919–932. doi:10.1056/NEJMra012242.PubMedCrossRef

Michie, S., Bobrow, M., & Mareau, T. (2001). Predictive genetic testing in children and adults: a study of emotional impact. Journal of Medical Genetics, 38, 519–526. doi:10.1136/jmg.38.8.519.PubMedCrossRef

Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis: An expanded sourcebook (2nd ed.). London: Sage.

Miller, H. H., Bauman, L. J., Friedman, D. R., & DeCosse, J. J. (1986). Psychosocial adjustment of familial polyposis patients and participation in a chemoprevention trial. International Journal of Psychiatry in Medicine, 16(3), 211–230. doi:10.2190/DAE0-EWPX-R7D6-LFNY.PubMedCrossRef

Neale, K., Ritchie, S., & Thompson, J. (1990). Screening of offspring of patients with familial ademonatous polyposis: The St. Mark’s Hospital Polyposis Register experience. In L. Herrera (Ed.), Familial adenomatous polyposis, pp. 61–66. New York: Liss, Alan R.

Nugent, K., & Phillips, R. (1992). Rectal cancer risk in older patients with familial adenomatous polyposis and on ileorectal anastomosis: a cause for concern. British Journal of Surgery, 79, 1204–1206. doi:10.1002/bjs.1800791136.PubMedCrossRef

Parc, Y. R., Olschwang, S., Desaint, B., Schmitt, G., Parc, R. G., & Tiret, E. (2001). Familial adenomatous polyposis: prevalence of adenomas in the ileal pouch after restorative proctocolectomy. Annals of Surgery, 233(3), 360–364. doi:10.1097/00000658-200103000-00009.PubMedCrossRef

Petersen, G., & Brensinger, J.D. (1996). Genetic testing and counseling in familial adenomatous polyposis. Oncology, 10(1), 89–94.

Petersen, G., Slack, J., & Nakamura, Y. (1991). Screening guidelines and premorbid diagnosis of familial adenomatous polyposis using linkage. Gastroenterology, 100, 1658–1664.PubMed

Pitman, M. A., & Maxwell, J. A. (1992). Qualitative approaches to evaluation: Models and methods. In M. D. LeCompte, W. L. Millroy & J. Preissle (Eds.), Handbook of qualitative research in education, pp. 729–770. San Diego: Academic Press.

Powell, S., Petersen, G., Krush, A., Booker, S., Jen, J., Giardiello, F., et al. (1993). Molecular diagnosis of familial adenomatous polyposis. The New England Journal of Medicine, 329, 1982–1987. doi:10.1056/NEJM199312303292702.PubMedCrossRef

van Duijvendijk, P., Slors, J., Taat, C., Oosterveld, P., Srangers, M., Obertop, H., et al. (2000). Quality of life after total colectomy with ileorectal anastomosis or proctocolectomy and ileal pouch-anal anastomosis for familial adenomatous polyposis. British Journal of Surgery, 87, 590–596. doi:10.1046/j.1365-2168.2000.01442.x.PubMedCrossRef

Vinokur, A. D., Threatt, B. A., Vinokur-Kaplan, D., & Satariano, W. A. (1990). The process of recovery from breast cancer for younger and older patients. Changes during the first year. Cancer, 65(5), 1242–1254. doi:10.1002/1097-0142(19900301) 65:5<1242::AID-CNCR2820650535>3.0.CO;2-1.PubMedCrossRef

Title: Psychosocial Impact of Familial Adenomatous Polyposis on Young Adults: A Qualitative Study
Authors: Shab Mireskandari
Jennifer Sangster
Bettina Meiser
Belinda Thewes
Claire Groombridge
Allan Spigelman
Lesley Andrews
Publication date: 01-10-2009
Publisher: Springer US
Published in: Journal of Genetic Counseling / Issue 5/2009
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-009-9231-2

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Psychosocial Impact of Familial Adenomatous Polyposis on Young Adults: A Qualitative Study

Abstract

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Please log in to get access to this content

Other articles of this Issue 5/2009

The Effect of BRCA Gene Testing on Family Relationships: A Thematic Analysis of Qualitative Interviews

A Remembrance of Dr. George Tiller

A Cross Sectional Study Exploring Factors Impacting Recruitment of African American College Students into the Genetic Counseling Profession

Role of the Disease in the Psychological Impact of Pre-Symptomatic Testing for SCA2 and FAP ATTRV30M: Experience with the Disease, Kinship and Gender of the Transmitting Parent

Parents’ Perceptions of Autism Spectrum Disorder Etiology and Recurrence Risk and Effects of their Perceptions on Family Planning: Recommendations for Genetic Counselors

Telephoned BRCA1/2 Genetic Test Results: Prevalence, Practice, and Patient Satisfaction