Psychological implications of living with familial adenomatous polyposis

Acta Gastro-Enterologica Belgica

Volumn 74, Issue 3, 2011, Pages 438-444

  Claes, E ^a   Renson, M ^a   Delespesse, A ^a   de Hoe, V ^a   Haelterman, G ^a   Kartheuser, A ^a,b   van Cutsem, E ^a,c  

^a Familial Adenomatous Polyposis Association FAPA   (Belgium)

^b CLINIQUES UNIVERSITAIRES SAINT LUC   (Belgium)

^c UNIVERSITY HOSPITALS LEUVEN   (Belgium)

Author keywords

[No Author keywords available]

Indexed keywords

CLINICAL PRACTICE; COPING BEHAVIOR; DISTRESS SYNDROME; FAMILIAL COLON POLYPOSIS; FAMILY; HUMAN; INTERPERSONAL COMMUNICATION; MEDICAL DECISION MAKING; PRENATAL DIAGNOSIS; PSYCHOLOGICAL ASPECT; PSYCHOMETRY; RELATIVE; REVIEW;

ADAPTATION, PSYCHOLOGICAL; ADENOMATOUS POLYPOSIS COLI; FAMILY HEALTH; HUMANS; REPRODUCTION;

EID: 80053577176     PISSN: 00015644     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Review

References (50)

1. Nandakumar G., Morgan J.A., Silverberg D., Steinhagen A. Familial Polyposis Coli: clinical manifestations, evaluation, management and treatment. Mt. Sinai J. Med., 2004, 71: 384-391.
2. Bleiker E.M.A., Hahn D.E.E., Aaronson N.K. Psychosocial issues in cancer genetics. Acta Oncol., 2003, 42: 276-286.
3. Braithwaite D., Emery J., Walter F., Prevost A.T., Sutton S. Psychological impact of genetic counselling for familial cancer: a systematic review and meta-analysis. Fam. Cancer, 2006, 5: 61-75.
4. Claes E. A psychological perspective on genetic testing for hereditary cancers. Psychological aspects of uptake and impact on genetic testing for hereditary breast and ovarian cancer and hereditary nonpolyposis colorectal cancer. Leuven: Centrum Menselijke Erfelijkheid, 2005.
5. Lee R.C., Kmet L., Cook L.S., Lorenzetti D., Godlovitch G., Einsiedel E. Risk assessment for inherited susceptibility to cancer: a review of the psychosocial and ethical dimensions. Genet. Test., 2005, 9: 66-79.
6. Meiser B. Psychological impact of genetic testing for cancer susceptibility: an update of the literature. Psychooncology, 2005, 14: 1060-1074.
7. Tercyak K.P., Streisand R., Peshkin B.N., Lerman C. Psychosocial impact of predictive testing for illness on children and families: challenges for a new millennium. J. Clin. Psychol. Med. Settings, 2000, 7: 55-68.
8. Evers-Kiebooms G., Welkenhuysen M., Claes E., Decruyenaere M., Denayer L. The psychological complexity of predictive testing for late onset neurogenetic diseases and hereditary cancers: implications for multidisciplinary counselling and for genetic education. Soc. Sci. Med., 2000, 51: 831-841.
9. Andrews L., Mireskandari S., Jessen J., Thewes B., Solomon M., Macrae F., Meiser B. Impact of familial adenomatous polyposis on young adults: Attitudes toward genetic testing, support, and information needs. Genet. Med., 2006, 8: 697-703.
10. Denayer L., Evers-Kiebooms G., Tejpar S., Legius E., Van Cutsem E. Beeldvorming, overdracht van informatie en risicoperceptie in families met familiale adenomateuse polyposis. Gedrag Gezondheid, 1999, 27: 245-254.
11. Esplen M.J., Berk T., Butler K., Gallinger S., Cohen Z., Trinkhaus M. Quality of life in adults diagnoses with familial adenomatous polyposis and desmoid tumor. Dis. Colon Rectum, 2004, 47: 687-696.
12. Miller H.H., Bauman L.J., Friedman D.R., De Cosse J.J. Psychosocial adjustment of Familial Adenomatous Polyposis patients and participation in a chemoprevention trial. Int. J. Psychiatry Med., 1986-1987, 16: 211-229.
13. Levitt A.J., Rodin G., Cohen Z., Berk T. Coping styles, psycho -pathology and intellectual performance in patients with familial adenomatous polyposis. Gen. Hosp. Psychiatry, 1992, 14: 61-68.
14. Michie S., French D.P., Marteau T.M. Predictive genetic testing: mediators and moderators of anxiety. Int. J. Behav. Med., 2002, 61: 345-349.
15. Michie S., Mc Donald V., Marteau T. Understanding responses to predictive testing: a grounded theory approach. Psychol. Health, 1996, 11: 455-470.
16. Giarelli E. Self-surveillance for genetic predisposition to cancer: behaviors and emotions. Oncol. Nurs. Forum, 2006, 33: 221-231.
17. Leventhal H., Diefenbach M., Leventhal E. Illness cognition: using common sense to understand treatment adherence and affect cognition interactions. Cognit. Ther. Res., 1992, 16: 143-163.
18. Kinney A.Y., Hicken B., Simonsen S.E., Venne V., Lowstuter K., Balzotti J., Burt R.W. Colorectal cancer surveillance behaviours among members of typical and attenuated FAP families. Am. J. Gastroenterol., 2007, 102: 153-162.
19. Dillon M., Brown S., Casey W., Walsh D., Durnin M., Abubaker K., Drumm B. Colonoscopy under general anesthesia in children. Pediatrics, 1998, 102: 381-383.
20. Rahi J.S., Manaras I., Tuomainen H., Hundt G.L. Meeting the needs of parents around the time of diagnosis of disability among their children: evaluation of a novel program for information, support and liaison by key workers. Pediatrics, 2004, 114: 477-482.
21. Evans D.G.R., Maher E.R., Mac Leod R., Davies D.R., Craufurd D. Uptake of genetic testing for cancer predisposition. J. Med. Genet., 1997, 34: 746-748.
22. Mac Donald F., Morton D.G., Rindl P.M., Haydon J., Cullen R., Gibson J., Neoptolemos J.P., Keighley M.R., Mc Keown C.M., Hulten M. Predictive diagnosis of familial adenomatous polyposis with linked DNA markers: a population based study. BMJ, 1992, 304: 869-872.
23. Petersen G.M., Boyd P.A. Gene tests and counseling for colorectal cancer risk: Lessons from Familial Polyposis. J. Natl. Cancer Inst. Monogr., 17: 67-71.
24. Dudok Dewit A.C., Duivenvoorden H.J., Passchier J., Niermeijer M.F., Tibben A. Course of distress experienced by persons at risk for an autosomal dominant inheritable disorder participating in a predictive testing program: an explorative study. Rotterdam/Leiden Genetics Workgroup. Psychosom. Med., 1998, 60: 543-549.
25. Whitelaw S., Northover J.M., Hodgson S.V. Attitudes to predictive DNA testing in familial adenomatous polyposis. J. Med. Genet., 1996, 33: 540-543.
26. Michie S., Mc Donald V., Bobrow M., Mc Keown C., Marteau T. Parent's reponses to predictive genetic testing in their children: report of a single case study. J. Med. Genet., 1996, 33: 313-318.
27. Codori A.M., Petersen G.M., Boyd P., Brandt J., Giardiello F.M. Genetic testing for cancer in children. Short-term psychological effect. Arch. Pediatr. Adolesc. Med., 1996, 150: 1131-1138.
28. Codori A.M., Zwacki K.L., Petersen G.M., Miglioretti D.L., Bacon J.A., Trimbath J.D., Booker S.V., Picarello K., Giardiello F.M. Genetic testing for hereditary colorectal cancer in children: Long-term psychological effects. Am. J. Med. Genet. A, 2003, 116: 117-128.
29. Michie S., Bobrow M., Marteau T.M., ON BEHALF OF THE FAP COLLABORATIVE RESEARCH GROUP. Predictive genetic testing in children and adults: a study of emotional impact. J. Med. Genet., 2001, 38: 519-526.
30. Dudok Dewit A.C., Tibben A., Duivenvoorden H.J., Frets G., Zoeteweij M.W., Losekoot M., Van Haeringen A., Niermeijer M.F., Passchier J. Psychological distress in applicants for predictive DNA testing for autosomal dominant, heritable, late onset disorders. The Rotterdam/Leiden Genetics Workgroup. J. Med. Genet., 1997, 34: 382-390.
31. Dudok Dewit A.C., Tibben A., Duivenvoorden H.J., Niermeijer MF., Passchier J. Predicting adaptation to presymptomatic DNA testing for late onset disorders: Who will experience distress? Rotterdam/Leiden Genetics Workgroup. J. Med. Genet., 1998, 35: 745-754.
32. Dudok Dewit A.C., Tibben A., Duivenvoorden H.J., Niermeijer M.F., Passchier J., Trijsburg R.W. Distress in individuals facing predictive DNA testing for autosomal dominant late-onset disorders: comparing questionnaire results with in-depth interviews. Rotterdam/Leiden Genetics Workgroup. Am. J. Med. Genet., 1998, 75: 62-74.
33. Rozen P., Macrae F. Familial adenomatous polyposis: the practical applications of clinical and molecular screening. Fam. Cancer, 2006, 5: 227-235.
34. Burn J., Chapman P., Delhanty J., Wood C., Lalloo F., Cachon-Gonzalez M.B., Tsioupra K., Church W., Rhodes M., Gunn A. The UK Northern region genetic register for familial adenomatous polyposis coli: use of age of onset, congenital hypertrophy of the retinal pigment epithelium and DNA markers in risk calculations. J. Med. Genet., 1991, 28: 289-296.
35. Moutou C., Gardes N., Nicod J.C., Viville S. Strategies and outcomes of PGD of familial adenomatous polyposis. Mol. Hum. Reprod., 2007, 13: 95-101.
36. Spits C., De Rycke M., Van Ranst N., Verpoest W., Lissens W., Van Steirteghem A., Liebaers I., Sermon K. Preimplantation genetic diagnosis for cancer predisposition syndromes. Prenat. Diagn., 2007, 27: 447-456.
37. Kastrinos F., Stoffel E.M., Balmaña J., Syngal S. Attitudes towards prenatal genetic testing in patients with familial adenomatous polyposis. Am. J. Gastroenterol., 2007, 102: 1284-1290.
38. Rechitsky S. (2002). Preimplantation genetic diagnosis for cancer predisposition. Reprod. BioMed. Online, 2002, 5: 148-155.
39. Davis T., Song B., Cram D.S. Preimplantation genetic diagnosis of familial adenomatous polyposis. Reprod. BioMed. Online, 2006, 13: 707-711.
40. Offit K., Kohut K., Clagett B., Wadsworth E.A., Lafaro K.J., Cummings S., White M., Sagi M., Bernstein D., Davis J.G. Cancer genetic testing and assisted reproduction. J. Clin. Oncol., 2006, 24: 4775-4782.
41. Soini S., Ibarreta D., Anastasiadou V., Aymé S., Braga S., Cornel M., Coviello DA., Evers-Kiebooms G., Geraedts J., Gianaroli L., Harper J., Kosztolanyi G., Lundin K., Rodrigues-Cerezo E., Sermon K., Sequeiros J., Tranebjaerg L., Kääriäinen H. ON BEHALF OF ESHG AND ESHRE. The interface between assisted reproductive technologies and genetics: technical, social, ethical and legal issues. Eur. J. Hum. Genet., 2006, 14: 588-645.
42. Kmietowicz Z. UK clinic allowed to screen embryos for rare bowel cancer. BMJ, 2004, 329: 1061.
43. Niermeijer M.F., De Wert G., Dondorp W. Preimplantation genetic diagnosis for cancer. Lancet Oncol., 2006, 7: 794-795.
44. Editorial. Preimplantation genetic diagnosis - for or against humanity? Lancet, 2004, 364: 1729-1730.
45. Asangla A.O., Wells D., Handyside A.H., Winston R.M.L., Delhanty J.D.A. Preimplantation genetic diagnosis of inherited cancer: familial adenomatous polyposis coli. J. Assist. Reprod. Genet., 1998, 15: 140-144.
46. THE LANCET ONCOLOGY. Ethics of preimplantation genetic diagnosis for cancer. Lancet Oncol., 2006, 7: 611.
47. Peshkin B.N., Nusbaum R.H., Demarco T.A. Genetic counseling about reproductive options for hereditary cancer: what is the standard of care? J. Clin. Oncol., 2007, 25: 911-912.
48. Schover LR. Psychosocial aspects of infertility and decisions about reproduction in young cancer survivors. Med. Pediatr. Oncol., 1999, 33: 53-59.
49. Tercyak K.P., Streisand R., Peshkin B.N., Lerman C. Psycholsocial impact of predictive J. Clin. Psychol. Med. Settings, 2000, 7: 55-68.
50. Bülow S. Results of national registration of familial adenomatous polyposis. Gut, 2003, 52: 742-746.