100 years lynch syndrome: What have we learned about psychosocial issues?

Familial Cancer

Volumn 12, Issue 2, 2013, Pages 325-339

  Bleiker, Eveline M A ^a   Esplen, Mary Jane ^b   Meiser, Bettina ^c   Petersen, Helle Vendel ^d   Patenaude, Andrea Farkas ^e  

^a NETHERLANDS CANCER INSTITUTE   (Netherlands)

^b UNIVERSITY HEALTH NETWORK   (Canada)

^c UNIVERSITY OF NEW SOUTH WALES   (Australia)

^d Copenhagen University Hospital ^*  (Denmark)

^e HARVARD MEDICAL SCHOOL   (United States)

Author keywords

Impact of genetic counseling and testing; Lynch Syndrome; Overview; Psychosocial

Indexed keywords

ACETYLSALICYLIC ACID; MISMATCH REPAIR PROTEIN;

CANCER CHEMOTHERAPY; CANCER DIAGNOSIS; CANCER GENETICS; CANCER PREVENTION; CANCER RISK; CANCER SCREENING; CANCER SURGERY; CANCER SUSCEPTIBILITY; COLON RESECTION; COLONOSCOPY; DEPRESSION; DISTRESS SYNDROME; EARLY DIAGNOSIS; ENDOMETRIUM CANCER; FAMILY HISTORY; FAMILY INTERACTION; GENE MUTATION; GENETIC COUNSELING; GENETIC RISK; GENETIC SCREENING; HEREDITARY NONPOLYPOSIS COLORECTAL CANCER; HUMAN; HYSTERECTOMY; INTERPERSONAL COMMUNICATION; LIFESTYLE MODIFICATION; MEDICAL HISTORY; MICROSATELLITE INSTABILITY; ONCOLOGY; OVARY CANCER; PATIENT ATTITUDE; PATIENT DECISION MAKING; PATIENT EDUCATION; PRIORITY JOURNAL; PROGENY; PSYCHOONCOLOGY; PSYCHOSOCIAL CARE; QUESTIONNAIRE; RANDOMIZED CONTROLLED TRIAL (TOPIC); REVIEW; RISK ASSESSMENT; SALPINGOOOPHORECTOMY; SELF CONCEPT; SMOKING CESSATION; SOCIAL STIGMA; SOCIAL SUPPORT; STRUCTURED INTERVIEW; WEIGHT CONTROL;

COLORECTAL NEOPLASMS, HEREDITARY NONPOLYPOSIS; EARLY DETECTION OF CANCER; GENETIC COUNSELING; GENETIC PREDISPOSITION TO DISEASE; GENETIC TESTING; HISTORY, 20TH CENTURY; HISTORY, 21ST CENTURY; HUMANS; PSYCHOLOGY;

EID: 84880917367     PISSN: 13899600     EISSN: 15737292     Source Type: Journal    
DOI: 10.1007/s10689-013-9653-8     Document Type: Review

References (144)

1. Vasen HF, Blanco I, Aktan-Collan K, Gopie JP, Alonso A, Aretz S, Bernstein I, Bertario L, Burn J, Capella G, Colas C, Engel C, Frayling IM, Genuardi M, Heinimann K, Hes FJ, Hodgson SV, Karagiannis JA, Lalloo F, Lindblom A, Mecklin JP, Moller P, Myrhoj T, Nagengast FM, Parc Y, Ponz de Leon M, Renkonen-Sinisalo L, Sampson JR, Stormorken A, Sijmons RH, Tejpar S, Thomas HJ, Rahner N, Wijnen JT, Jarvinen HJ, Moslein G (2013) Revised guidelines for the clinical management of Lynch syndrome (HNPCC): recommendations by a group of European experts. Gut 62(6):812-823. doi: 10.1136/gutjnl-2012-304356
2. Lynch HT, Lynch PM, Lanspa SJ, Snyder CL, Lynch JF, Boland CR (2009) Review of the Lynch syndrome: history, molecular genetics, screening, differential diagnosis, and medicolegal ramifications. Clin Genet 76:1-18
3. Engel C, Loeffler M, Steinke V, Rahner N, Holinski-Feder E, Dietmaier W, Schackert HK, Goergens H, Knebel Doeberitz M, Goecke TO, Schmiegel W, Buettner R, Moeslein G, Letteboer TG, Garcia EG, Hes FJ, Hoogerbrugge N, Menko FH, van Os TA, Sijmons RH, Wagner A, Kluijt I, Propping P, Vasen HF (2012) Risks of less common cancers in proven mutation carriers with lynch syndrome. J Clin Oncol 30:4409-4415
4. Lynch HT, de la Chapelle A (2003) Hereditary colorectal cancer. N Engl J Med 348:919-932
5. Renkonen-Sinisalo L, Aarnio M, Mecklin JP, Jarvinen HJ (2000) Surveillance improves survival of colorectal cancer in patients with hereditary nonpolyposis colorectal cancer. Cancer Detect Prev 24:137-142
6. Syngal S, Weeks JC, Schrag D, Garber JE, Kuntz KM (1998) Benefits of colonoscopic surveillance and prophylactic colectomy in patients with hereditary nonpolyposis colorectal cancer mutations. Ann Intern Med 129:787-796
7. Jarvinen HJ, Aarnio M, Mustonen H, Aktan-Collan K, Aaltonen LA, Peltomaki P, de la Chapelle A, Mecklin JP (2000) Controlled 15-year trial on screening for colorectal cancer in families with hereditary nonpolyposis colorectal cancer. Gastroenterology 118:829-834
8. Holland JC (2002) History of psycho-oncology: overcoming attitudinal and conceptual barriers. Psychosom Med 64:206-221
9. Sutherland AM, Orbach CE, Dyk RB, Bard M (1952) The psychological impact of cancer and cancer surgery. I. Adaptation to the dry colostomy; preliminary report and summary of findings. Cancer 5:857-872
10. Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, Filiberti A, Flechtner H, Fleishman SB, de Haes JC (1993) The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 85:365-376
11. Cella DF, Tulsky DS, Gray G, Sarafian B, Linn E, Bonomi A, Silberman M, Yellen SB, Winicour P, Brannon J (1993) The Functional Assessment of Cancer Therapy scale: development and validation of the general measure. J Clin Oncol 11:570-579
12. Bultz BD, Johansen C (2011) Screening for distress, the 6th vital sign: where are we, and where are we going? Psychooncology 20:569-571
13. Warthin A (1985) Classics in oncology. Heredity with reference to carcinoma as shown by the study oh the cases examined in the pathological laboratory of the University of Michigan, 1895-1913. By Aldred Scott Warthin. CA Cancer J Clin 35:348-359
14. Lynch HT, Krush AJ (1968) Genetic counseling and cancer: implications for cancer control. South Med J 61:265-269
15. Krush AJ, Lynch HT, Magnuson C (1965) Attitudes toward Cancer in a "Cancer family": implications for cancer detection. Am J Med Sci 249:432-438
16. Lerman C, Lustbader E, Rimer B, Daly M, Miller S, Sands C, Balshem A (1995) Effects of individualized breast cancer risk counseling: a randomized trial. J Natl Cancer Inst 87:286-292
17. Lerman C, Daly M, Masny A, Balshem A (1994) Attitudes about genetic testing for breast-ovarian cancer susceptibility. J Clin Oncol 12:843-850
18. Jarvinen HJ, Renkonen-Sinisalo L, Aktan-Collan K, Peltomaki P, Aaltonen LA, Mecklin JP (2009) Ten years after mutation testing for Lynch syndrome: cancer incidence and outcome in mutation-positive and mutation-negative family members. J Clin Oncol 27:4793-4797
19. Jarvinen HJ, Aarnio M, Mustonen H, Aktan-Collan K, Aaltonen LA, Peltomaki P, Mecklin JP (2000) Controlled 15-year trial on screening for colorectal cancer in families with hereditary nonpolyposis colorectal cancer. Gastroenterology 118:829-834
20. Jarvinen HJ, Renkonen-Sinisalo L, Aktan-Collan K, Peltomaki P, Aaltonen LA, Mecklin JP (2009) Ten years after mutation testing for Lynch syndrome: cancer incidence and outcome in mutation-positive and mutation-negative family members. J Clin Oncol 27:4793-4797
21. Vasen HF, Abdirahman M, Brohet R, Langers AM, Kleibeuker JH, van Kouwen M, Koornstra JJ, Boot H, Cats A, Dekker E, Sanduleanu S, Poley JW, Hardwick JC, de Vos Tot Nederveen Cappel WH, van der Meulen-de Jong AE, Tan TG, Jacobs MA, Mohamed FL, de Boer SY, van de Meeberg PC, Verhulst ML, Salemans JM, van Bentem N, Westerveld BD, Vecht J, Nagengast FM (2010) One to 2-year surveillance intervals reduce risk of colorectal cancer in families with Lynch syndrome. Gastroenterology 138:2300-2306
22. de Vos tot Nederveen Cappel WH, Jarvinen HJ, Lynch PM, Engel C, Mecklin JP, Vasen HFA (2013) Colorectal surveillance in Lynch syndrome families. Fam Cancer. doi: 10.1007/s10689-013-9631-1
23. de Jong AE, Hendriks YM, Kleibeuker JH, de Boer SY, Cats A, Griffioen G, Nagengast FM, Nelis FG, Rookus MA, Vasen HF (2006) Decrease in mortality in Lynch syndrome families because of surveillance. Gastroenterology 130:665-671
24. Lerman C, Hughes C, Trock BJ, Myers RE, Main D, Bonney A, Abbaszadegan MR, Harty AE, Franklin BA, Lynch JF, Lynch HT (1999) Genetic testing in families with hereditary nonpolyposis colon cancer. JAMA 281:1618-1622
25. Hadley DW, Jenkins J, Dimond E, Nakahara K, Grogan L, Liewehr DJ, Steinberg SM, Kirsch I (2003) Genetic counseling and testing in families with hereditary nonpolyposis colorectal cancer. Arch Intern Med 163:573-582
26. Peterson SK, Watts BG, Koehly LM, Vernon SW, Baile WF, Kohlmann WK, Gritz ER (2003) How families communicate about HNPCC genetic testing: findings from a qualitative study. Am J Med Genet C Semin Med Genet 119:78-86
27. Keller M, Jost R, Kadmon M, Wullenweber HP, Haunstetter CM, Willeke F, Jung C, Gebert J, Sutter C, Herfarth C, Buchler MW (2004) Acceptance of and attitude toward genetic testing for hereditary nonpolyposis colorectal cancer: a comparison of participants and nonparticipants in genetic counseling. Dis Colon Rectum 47:153-162
28. Aktan-Collan K, Mecklin JP, Jarvinen H, Nystrom-Lahti M, Peltomaki P, Soderling I, Uutela A, de la Chapelle A, Kaariainen H (2000) Predictive genetic testing for hereditary non-polyposis colorectal cancer: uptake and long-term satisfaction. Int J Cancer 89:44-50
29. Aktan-Collan KI, Kaariainen HA, Kolttola EM, Pylvanainen K, Jarvinen HJ, Haukkala AH, Mecklin JP (2011) Sharing genetic risk with next generation: mutation-positive parents' communication with their offspring in Lynch syndrome. Fam Cancer 10:43-50
30. Patenaude AF, Peterson SK (2010) Psychosocial issues in genetic testing for hereditary colorectal cancer. In: Holland JC, Breitbart WS, Jacobsen PB, Lederberg MS, Loscalzo MJ, McCorkle R (eds) Psycho-oncology. Oxford University Press, New York, pp 110-115
31. van Asperen CJ, Van Dijk S, Zoeteweij MW, Timmermans DR, de Bock GH, Meijers-Heijboer EJ, Niermeijer MF, Breuning MH, Kievit J, Otten W (2002) What do women really want to know? Motives for attending familial breast cancer clinics. J Med Genet 39:410-414
32. Shankar A, Chapman P, Goodship J (1999) Genetic counselling: do we recognise and meet the consultands' agenda? J Med Genet 36:580-582
33. Claes E, Denayer L, Evers-Kiebooms G, Boogaerts A, Legius E (2004) Predictive testing for hereditary non-polyposis colorectal cancer: motivation, illness representations and short-term psychological impact. Patient Educ Couns 55:265-274
34. Esplen MJ, Madlensky L, Butler K, McKinnon W, Bapat B, Wong J, Aronson M, Gallinger S (2001) Motivations and psychosocial impact of genetic testing for HNPCC. Am J Med Genet 103:9-15
35. Dewanwala A, Chittenden A, Rosenblatt M, Mercado R, Garber JE, Syngal S, Stoffel EM (2011) Attitudes toward childbearing and prenatal testing in individuals undergoing genetic testing for Lynch syndrome. Fam Cancer 10:549-556
36. Esplen MJ, Madlensky L, Aronson M, Rothenmund H, Gallinger S, Butler K, Toner B, Wong J, Manno M, McLaughlin J (2007) Colorectal cancer survivors undergoing genetic testing for hereditary non-polyposis colorectal cancer: motivational factors and psychosocial functioning. Clin Genet 72:394-401
37. Geer KP, Ropka ME, Cohn WF, Jones SM, Miesfeldt S (2001) Factors influencing patients' decisions to decline cancer genetic counseling services. J Genet Couns 10:25-40
38. Hall MA, Rich SS (2000) Patients' fear of genetic discrimination by health insurers: the impact of legal protections. Genet Med 2:214-221
39. Seppen J, Bruzzone L (2013) Lynch syndrome: the patients perspective. Fam Cancer. doi: 10.1007/s10689-013-9630-2
40. Hampel H (2010) Point: justification for Lynch syndrome screening among all patients with newly diagnosed colorectal cancer. J Natl Compr Canc Netw 8:597-601
41. Vasen HF, Moslein G, Alonso A, Aretz S, Bernstein I, Bertario L, Blanco I, Bulow S, Burn J, Capella G, Colas C, Engel C, Frayling I, Rahner N, Hes FJ, Hodgson S, Mecklin JP, Moller P, Myrhoj T, Nagengast FM, Parc Y, Ponz de Leon M, Renkonen-Sinisalo L, Sampson JR, Stormorken A, Tejpar S, Thomas HJ, Wijnen J, Lubinski J, Jarvinen H, Claes E, Heinimann K, Karagiannis JA, Lindblom A, Dove-Edwin I, Muller H (2010) Recommendations to improve identification of hereditary and familial colorectal cancer in Europe. Fam Cancer 9:109-115
42. Umar A, Boland CR, Terdiman JP, Syngal S, de la Chapelle A, Ruschoff J, Fishel R, Lindor NM, Burgart LJ, Hamelin R, Hamilton SR, Hiatt RA, Jass J, Lindblom A, Lynch HT, Peltomaki P, Ramsey SD, Rodriguez-Bigas MA, Vasen HF, Hawk ET, Barrett JC, Freedman AN, Srivastava S (2004) Revised Bethesda Guidelines for hereditary nonpolyposis colorectal cancer (Lynch syndrome) and microsatellite instability. J Natl Cancer Inst 96:261-268
43. Lindor NM, Petersen GM, Hadley DW, Kinney AY, Miesfeldt S, Lu KH, Lynch P, Burke W, Press N (2006) Recommendations for the care of individuals with an inherited predisposition to Lynch syndrome: a systematic review. JAMA 296:1507-1517
44. Manne SL, Chung DC, Weinberg DS, Vig HS, Catts Z, Cabral MK, Shannon K, Meropol NJ (2007) Knowledge and attitudes about microsatellite instability testing among high-risk individuals diagnosed with colorectal cancer. Cancer Epidemiol Biomarkers Prev 16:2110-2117
45. Landsbergen KM, Prins JB, Brunner HG, Hoogerbrugge N (2009) Genetic testing offered directly after the diagnosis of colorectal cancer: a pilot study on the reactions of patients. Genet Couns 20:317-325
46. Landsbergen KM, Prins JB, Brunner HG, van Duijvendijk P, Nagengast FM, van Krieken JH, Ligtenberg M, Hoogerbrugge N (2012) Psychological distress in newly diagnosed colorectal cancer patients following microsatellite instability testing for Lynch syndrome on the pathologist's initiative. Fam Cancer 11:259-267
47. Manne SL, Meropol NJ, Weinberg DS, Vig H, Ali-Khan Catts Z, Manning C, Ross E, Shannon K, Chung DC (2010) Facilitating informed decisions regarding microsatellite instability testing among high-risk individuals diagnosed with colorectal cancer. J Clin Oncol 28:1366-1372
48. Hall MJ, Manne SL, Winkel G, Chung DS, Weinberg DS, Meropol NJ (2011) Effects of a decision support intervention on decisional conflict associated with microsatellite instability testing. Cancer Epidemiol Biomarkers Prev 20:249-254
49. Bleiker EMA, Menko FH, Kluijt I, Taal BG, Gerritsma MA, Wever LDV, Aaronson NK (2007) Colorectal cancer in the family: psychosocial distress and social issues in the years following genetic counseling. Hereditary Cancer Clin Pract 5:59-66
50. Gritz ER, Peterson SK, Vernon SW, Marani SK, Baile WF, Watts BG, Amos CI, Frazier ML, Lynch PM (2005) Psychological impact of genetic testing for hereditary nonpolyposis colorectal cancer. J Clin Oncol 23:1902-1910
51. Bleiker EM, Menko FH, Taal BG, Kluijt I, Wever LD, Gerritsma MA, Vasen HF, Aaronson NK (2005) Screening behavior of individuals at high risk for colorectal cancer. Gastroenterology 128:280-287
52. Vernon SW, Gritz ER, Peterson SK, Amos CI, Perz CA, Baile WF, Lynch PM (1997) Correlates of psychologic distress in colorectal cancer patients undergoing genetic testing for hereditary colon cancer. Health Psychol 16:73-86
53. Esplen MJ, Urquhart C, Butler K, Gallinger S, Aronson M, Wong J (2003) The experience of loss and anticipation of distress in colorectal cancer patients undergoing genetic testing. J Psychosom Res 55:427-435
54. Bleiker EM, Menko FH, Taal BG, Kluijt I, Wever LD, Gerritsma MA, Vasen HF, Aaronson NK (2003) Experience of discharge from colonoscopy of mutation negative HNPCC family members. J Med Genet 40:e55
55. Collins V, Halliday J, Warren R, Williamson R (2000) Cancer worries, risk perceptions and associations with interest in DNA testing and clinic satisfaction in a familial colorectal cancer clinic. Clin Genet 58:460-468
56. DudokdeWit AC, Tibben A, Frets PG, Meijers-Heijboer EJ, Devilee P, Klijn JG, Oosterwijk JC, Niermeijer MF (1997) BRCA1 in the family: a case description of the psychological implications. Am J Med Genet 71:63-71
57. Codori AM, Waldeck T, Petersen GM, Miglioretti D, Trimbath JD, Tillery MA (2005) Genetic counseling outcomes: perceived risk and distress after counseling for hereditary colorectal cancer. J Genet Couns 14:119-132
58. Murakami Y, Okamura H, Sugano K, Yoshida T, Kazuma K, Akechi T, Uchitomi Y (2004) Psychologic distress after disclosure of genetic test results regarding hereditary nonpolyposis colorectal carcinoma. Cancer 101:395-403
59. van Oostrom I, Meijers-Heijboer H, Duivenvoorden HJ, Brocker-Vriends AH, van Asperen CJ, Sijmons RH, Seynaeve C, van Gool AR, Klijn JG, Tibben A (2006) Experience of parental cancer in childhood is a risk factor for psychological distress during genetic cancer susceptibility testing. Ann Oncol 17:1090-1095
60. Keller M, Jost R, Haunstetter CM, Kienle P, Knaebel HP, Gebert J, Sutter C, Knebel-Doeberitz M, Cremer F, Mazitschek U (2002) Comprehensive genetic counseling for families at risk for HNPCC: impact on distress and perceptions. Genet Test 6:291-302
61. Aktan-Collan K, Haukkala A, Mecklin JP, Uutela A, Kaariainen H (2001) Psychological consequences of predictive genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): a prospective follow-up study. Int J Cancer 93:608-611
62. Ashida S, Koehly LM, Roberts JS, Chen CA, Hiraki S, Green RC (2009) Disclosing the disclosure: factors associated with communicating the results of genetic susceptibility testing for Alzheimer's disease. J Health Commun 14:768-784
63. Meiser B, Collins V, Warren R, Gaff C, St John DJ, Young MA, Harrop K, Brown J, Halliday J (2004) Psychological impact of genetic testing for hereditary non-polyposis colorectal cancer. Clin Genet 66:502-511
64. Collins VR, Meiser B, Ukoumunne OC, Gaff C, St John DJ, Halliday JL (2007) The impact of predictive genetic testing for hereditary nonpolyposis colorectal cancer: three years after testing. Genet Med 9:290-297
65. Ho SM, Ho JW, Chan CL, Kwan K, Tsui YK (2003) Decisional consideration of hereditary colon cancer genetic test results among Hong Kong chinese adults. Cancer Epidemiol Biomarkers Prev 12:426-432
66. Ho SM, Ho JW, Bonanno GA, Chu AT, Chan EM (2010) Hopefulness predicts resilience after hereditary colorectal cancer genetic testing: a prospective outcome trajectories study. BMC Cancer 10:279
67. Loader S, Shields C, Rowley PT (2005) Impact of genetic counseling and DNA testing on individuals with colorectal cancer with a positive family history: a population-based study. Genet Test 9:313-319
68. Aktan-Collan K, Kääriäinen H, Järvinen H, Peltomäki P, Pylvänäinen K, Mecklin JP, Haukkala A (2013) Psychosocial consequences of predictive genetic testing for lynch syndrome and associations to surveillance behaviour in a 7-year follow-up study. Fam Cancer. doi: 10.1007/s10689-013-9628-9
69. Collins V, Meiser B, Gaff C, St John DJ, Halliday J (2005) Screening and preventive behaviors one year after predictive genetic testing for hereditary nonpolyposis colorectal carcinoma. Cancer 104:273-281
70. Weissman SM, Bellcross C, Bittner CC, Freivogel ME, Haidle JL, Kaurah P, Leininger A, Palaniappan S, Steenblock K, Vu TM, Daniels MS (2011) Genetic counseling considerations in the evaluation of families for Lynch syndrome - a review. J Genet Couns 20:5-19
71. Berliner JL, Fay AM (2007) Risk assessment and genetic counseling for hereditary breast and ovarian cancer: recommendations of the National Society of Genetic Counselors. J Genet Couns 16:241-260
72. Sivell S, Elwyn G, Gaff CL, Clarke AJ, Iredale R, Shaw C, Dundon J, Thornton H, Edwards A (2008) How risk is perceived, constructed and interpreted by clients in clinical genetics, and the effects on decision making: systematic review. J Genet Couns 17:30-63
73. Aktan-Collan K, Haukkala A, Mecklin JP, Uutela A, Kaariainen H (2001) Comprehension of cancer risk one and 12 months after predictive genetic testing for hereditary non-polyposis colorectal cancer. J Med Genet 38:787-792
74. Hadley DW, Jenkins JF, Steinberg SM, Liewehr D, Moller S, Martin JC, Calzone KA, Soballe PW, Kirsch IR (2008) Perceptions of cancer risks and predictors of colon and endometrial cancer screening in women undergoing genetic testing for Lynch syndrome. J Clin Oncol 26:948-954
75. Bjorvatn C, Eide GE, Hanestad BR, Oyen N, Havik OE, Carlsson A, Berglund G (2007) Risk perception, worry and satisfaction related to genetic counseling for hereditary cancer. J Genet Couns 16:211-222
76. Domanska K, Carlsson C, Bendahl PO, Nilbert M (2009) Knowledge about hereditary nonpolyposis colorectal cancer; mutation carriers and physicians at equal levels. BMC Med Genet 10:30
77. Vos J, Menko F, Jansen AM, van Asperen CJ, Stiggelbout AM, Tibben A (2011) A whisper-game perspective on the family communication of DNA-test results: a retrospective study on the communication process of BRCA1/2-test results between proband and relatives. Fam Cancer 10:87-96
78. Palmquist AE, Koehly LM, Peterson SK, Shegog M, Vernon SW, Gritz ER (2010) "The cancer bond": exploring the formation of cancer risk perception in families with Lynch syndrome. J Genet Couns 19:473-486
79. Werner-Lin A, Gardner DS (2009) Family illness narratives of inherited cancer risk: continuity and transformation. Fam Syst Health 27:201-212
80. Bartuma K, Nilbert M, Carlsson C (2012) Family perspectives in lynch syndrome becoming a family at risk, patterns of communication and influence on relations. Hered Cancer Clin Pract 10:6
81. Werner-Lin AV (2007) Danger zones: risk perceptions of young women from families with hereditary breast and ovarian cancer. Fam Process 46:335-349
82. Rao K (2009) Recent research in stress, coping and women's health. Curr Opin Psychiatry 22:188-193
83. Petersen HV, Esplen MJ, Ladelund S, Bernstein I, Sunde L, Carlsson C, Nilbert M (2011) Limited impact on self-concept in individuals with Lynch syndrome; results from a national cohort study. Fam Cancer 10:633-639
84. Esplen MJ, Stuckless N, Hunter J, Liede A, Metcalfe K, Glendon G, Narod S, Butler K, Scott J, Irwin E (2009) The BRCA Self-Concept Scale: a new instrument to measure self-concept in BRCA1/2 mutation carriers. Psychooncology 18:1216-1229
85. Esplen MJ, Stuckless N, Gallinger S, Aronson M, Rothenmund H, Semotiuk K, Stokes J, Way C, Green J, Butler K, Petersen HV, Wong J (2011) Development and validation of an instrument to measure the impact of genetic testing on self-concept in Lynch syndrome. Clin Genet 80:415-423
86. Markus H, Nurius P (1986) Possible selves. Am Psychol 41:954-969
87. Markus H, Wurf E (1987) The dynamic self-concept: a social psychological perspective. Annu Rev Psychol 38:299-337
88. Baumeister R (1998) The self. In: Gilbert D, Fiske S, Lindzey G (eds) The handbook of social psychology. Oxford University Press, New York, pp 680-740
89. Read CY, Perry DJ, Duffy ME (2005) Design and psychometric evaluation of the Psychological Adaptation to Genetic Information Scale. J Nurs Scholarsh 37:203-208
90. Schild S (1981) Social and psychological issues in genetic counseling. In: Thomas CC (ed) Genetic screening and counceling: a multidisciplinary perspective. Springfield, IL
91. Petersen HV, Domanska K, Bendahl PO, Wong J, Carlsson C, Bernstein I, Esplen MJ, Nilbert M (2011) Validation of a self-concept scale for Lynch syndrome in different nationalities. J Genet Couns 20:308-313
92. d'Agincourt-Canning L (2001) Experiences of genetic risk: disclosure and the gendering of responsibility. Bioethics 15:231-247
93. Stein KF (1995) Schema model of the self-concept. Image J Nurs Sch 27:187-193
94. Rodriguez-Bigas MA, Vasen HF, O'Malley L, Rosenblatt MJ, Farrell C, Weber TK, Petrelli NJ (1998) Health, life, and disability insurance and hereditary nonpolyposis colorectal cancer. Am J Hum Genet 62:736-737
95. Norum J, Tranebjaerg L (2000) Health, life and disability insurance and hereditary risk for breast or colorectal cancer. Acta Oncol 39:189-193
96. Apse KA, Biesecker BB, Giardiello FM, Fuller BP, Bernhardt BA (2004) Perceptions of genetic discrimination among at-risk relatives of colorectal cancer patients. Genet Med 6:510-516
97. Aktan-Collan K, Haukkala A, Kaariainen H (2001) Life and health insurance behaviour of individuals having undergone a predictive genetic testing programme for hereditary non-polyposis colorectal cancer. Commun Genet 4:219-224
98. Bleiker EM, Menko FH, Kluijt I, Taal BG, Gerritsma MA, Wever LD, Aaronson NK (2007) Colorectal cancer in the family: psychosocial distress and social issues in the years following genetic counselling. Hered Cancer Clin Pract 5:59-66
99. Barlow-Stewart K, Taylor SD, Treloar SA, Stranger M, Otlowski M (2009) Verification of consumers' experiences and perceptions of genetic discrimination and its impact on utilization of genetic testing. Genet Med 11:193-201
100. Joly Y, Ngueng Feze I, Simard J (2013) Genetic discrimination and life insurance: a systematic review of the evidence. BMC Med 11:25
101. Bleiker EM, Hahn DE, Aaronson NK (2003) Psychosocial issues in cancer genetics - current status and future directions. Acta Oncol 42:276-286
102. Watson M, Lloyd S, Davidson J, Meyer L, Eeles R, Ebbs S, Murday V (1999) The impact of genetic counselling on risk perception and mental health in women with a family history of breast cancer. Br J Cancer 79:868-874
103. Thewes B, Meiser B, Tucker K, Schnieden V (2003) Screening for psychological distress and vulnerability factors in women at increased risk for breast cancer: a review of the literature. Psychol Health Med 8(3):289-303
104. Cella D, Hughes C, Peterman A, Chang CH, Peshkin BN, Schwartz MD, Wenzel L, Lemke A, Marcus AC, Lerman C (2002) A brief assessment of concerns associated with genetic testing for cancer: the multidimensional impact of cancer risk assessment (MICRA) questionnaire. Health Psychol 21:564-572
105. Esplen MJ, Cappelli M, Wong J, Bottorff JL, Hunter J, Carroll J, Dorval M, Wilson B, Allanson J, Semotiuk K, Aronson M, Bordeleau L, Charlemagne N, Meschino W (2013) Development and validation of a brief screening instrument for psychosocial risk associated with genetic testing: a pan-Canadian cohort study. BMJ Open. doi: 10.1136/bmjopen-2012-002227
106. Eijzenga W, Aaronson NK, Hahn DEE, Kluijt I, Bleiker EMA (2011) Development and testing of a screening questionnaire for psychosocial problems in onco-genetics. Psycho-Oncology 20:86
107. Bleiker EMA, Eijzenga W, Aaronson NK, Hahn DEE, Sidharta GN, Kluijt I, Ausems MGEM (2013) The signal trial: screening for psychosocial problems in cancer genetic counseling. Fam Cancer 12:S19
108. Hadley DW, Jenkins JF, Dimond E, de Carvalho M, Kirsch I, Palmer CG (2004) Colon cancer screening practices after genetic counseling and testing for hereditary nonpolyposis colorectal cancer. J Clin Oncol 22:39-44
109. Stoffel EM, Mercado RC, Kohlmann W, Ford B, Grover S, Conrad P, Blanco A, Shannon KM, Powell M, Chung DC, Terdiman J, Gruber SB, Syngal S (2010) Prevalence and predictors of appropriate colorectal cancer surveillance in Lynch syndrome. Am J Gastroenterol 105:1851-1860
110. Hadley DW, Jenkins JF, Steinberg SM, Liewehr D, Moller S, Martin JC, Calzone KA, Soballe PW, Kirsch IR (2008) Perceptions of cancer risks and predictors of colon and endometrial cancer screening in women undergoing genetic testing for Lynch syndrome. J Clin Oncol 26:948-954
111. Ketabi Z, Mosgaard BJ, Gerdes AM, Ladelund S, Bernstein IT (2012) Awareness of endometrial cancer risk and compliance with screening in hereditary nonpolyposis colorectal cancer. Obstet Gynecol 120:1005-1012
112. Jarvinen HJ, Renkonen-Sinisalo L, Aktan-Collan K, Peltomaki P, Aaltonen LA, Mecklin JP (2009) Ten years after mutation testing for Lynch syndrome: cancer incidence and outcome in mutation-positive and mutation-negative family members. J Clin Oncol 27:4793-4797
113. Schmeler KM, Lynch HT, Chen LM, Munsell MF, Soliman PT, Clark MB, Daniels MS, White KG, Boyd-Rogers SG, Conrad PG, Yang KY, Rubin MM, Sun CC, Slomovitz BM, Gershenson DM, Lu KH (2006) Prophylactic surgery to reduce the risk of gynecologic cancers in the Lynch syndrome. N Engl J Med 354:261-269
114. Burn J, Gerdes AM, Macrae F, Mecklin JP, Moeslein G, Olschwang S, Eccles D, Evans DG, Maher ER, Bertario L, Bisgaard ML, Dunlop MG, Ho JW, Hodgson SV, Lindblom A, Lubinski J, Morrison PJ, Murday V, Ramesar R, Side L, Scott RJ, Thomas HJ, Vasen HF, Barker G, Crawford G, Elliott F, Movahedi M, Pylvanainen K, Wijnen JT, Fodde R, Lynch HT, Mathers JC, Bishop DT (2011) Long-term effect of aspirin on cancer risk in carriers of hereditary colorectal cancer: an analysis from the CAPP2 randomised controlled trial. Lancet 378:2081-2087
115. Ishii N, Arai M, Koyama Y, Ueno M, Yamaguchi T, Kazuma K, Muto T (2011) Factors affecting encouragement of relatives among families with Lynch syndrome to seek medical assessment. Fam Cancer 10:649-654
116. Dancyger C, Wiseman M, Jacobs C, Smith JA, Wallace M, Michie S (2011) Communicating BRCA1/2 genetic test results within the family: a qualitative analysis. Psychol Health 26:1018-1035
117. Mesters I, Ausems M, Eichhorn S, Vasen H (2005) Informing one's family about genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): a retrospective exploratory study. Fam Cancer 4:163-167
118. Seymour KC, Addington-Hall J, Lucassen AM, Foster CL (2010) What facilitates or impedes family communication following genetic testing for cancer risk? A systematic review and meta-synthesis of primary qualitative research. J Genet Couns 19:330-342
119. Morris BA, Hadley DW, Koehly LM (2013) The role of religious and existential well-being in families with lynch syndrome: prevention, family communication, and psychosocial adjustment. J Genet Couns. doi: 10.1007/s10897-013-9571-9
120. Green J, Richards M, Murton F, Statham H, Hallowell N (1997) Family communication and genetic counseling: the case of hereditary breast and ovarian cancer. J Genet Couns 6:45-60
121. Gaff CL, Collins V, Symes T, Halliday J (2005) Facilitating family communication about predictive genetic testing: probands' perceptions. J Genet Couns 14:133-140
122. Ersig AL, Williams JK, Hadley DW, Koehly LM (2009) Communication, encouragement, and cancer screening in families with and without mutations for hereditary nonpolyposis colorectal cancer: a pilot study. Genet Med 11:728-734
123. Coyle YM (2009) Lifestyle, genes, and cancer. Methods Mol Biol 472:25-56
124. Campbell PT, Curtin K, Ulrich CM, Samowitz WS, Bigler J, Velicer CM, Caan B, Potter JD, Slattery ML (2009) Mismatch repair polymorphisms and risk of colon cancer, tumour microsatellite instability and interactions with lifestyle factors. Gut 58:661-667
125. Palmquist AE, Upton R, Lee S, Panter AT, Hadley DW, Koehly LM (2011) Beliefs about cancer and diet among those considering genetic testing for colon cancer. J Nutr Educ Behav 43:150-156
126. Underhill ML, Lally RM, Kiviniemi MT, Murekeyisoni C, Dickerson SS (2012) Living my family's story: identifying the lived experience in healthy women at risk for hereditary breast cancer. Cancer Nurs 35(6):493-504
127. Lemon SC, Zapka JG, Clemow L (2004) Health behavior change among women with recent familial diagnosis of breast cancer. Prev Med 39:253-262
128. Audrain J, Schwartz M, Herrera J, Goldman P, Bush A (2001) Physical activity in first-degree relatives of breast cancer patients. J Behav Med 24:587-603
129. Madlensky L, Vierkant RA, Vachon CM, Pankratz VS, Cerhan JR, Vadaparampil ST, Sellers TA (2005) Preventive health behaviors and familial breast cancer. Cancer Epidemiol Biomarkers Prev 14:2340-2345
130. Palmquist AE, Upton R, Lee S, Panter AT, Hadley DW, Koehly LM (2011) Beliefs about cancer and diet among those considering genetic testing for colon cancer. J Nutr Educ Behav 43:150-156
131. Burton AM, Peterson SK, Marani SK, Vernon SW, Amos CI, Frazier ML, Lynch PM, Gritz ER (2010) Health and lifestyle behaviors among persons at risk of Lynch syndrome. Cancer Causes Control 21:513-521
132. Simpson JL (2010) Preimplantation genetic diagnosis at 20 years. Prenat Diagn 30:682-695
133. Avigad S, Peleg D, Barel D, Benyaminy H, Ben Baruch N, Taub E, Shohat M, Goshen Y, Cohen IJ, Yaniv I, Zaizov R (2004) Prenatal diagnosis in Li-Fraumeni syndrome. J Pediatr Hematol Oncol 26:541-545
134. Ao A, Wells D, Handyside AH, Winston RM, Delhanty JD (1998) Preimplantation genetic diagnosis of inherited cancer: familial adenomatous polyposis coli. J Assist Reprod Genet 15:140-144
135. Dommering CJ, van den Heuvel MR, Moll AC, Imhof SM, Meijers-Heijboer H, Henneman L (2010) Reproductive decision-making: a qualitative study among couples at increased risk of having a child with retinoblastoma. Clin Genet 78:334-341
136. Huang SM, Tao BL, Tzeng CC, Liu HT, Wang WP (1997) Prenatal molecular diagnosis of RET proto-oncogene mutation in multiple endocrine neoplasia type 2A. J Formos Med Assoc 96:542-544
137. Rechitsky S, Verlinsky O, Chistokhina A, Sharapova T, Ozen S, Masciangelo C, Kuliev A, Verlinsky Y (2002) Preimplantation genetic diagnosis for cancer predisposition. Reprod Biomed Online 5:148-155
138. Offit K, Kohut K, Clagett B, Wadsworth EA, Lafaro KJ, Cummings S, White M, Sagi M, Bernstein D, Davis JG (2006) Cancer genetic testing and assisted reproduction. J Clin Oncol 24:4775-4782
139. HFEA. Authority decision on the use of PGD for lower penetrance, later onset inherited conditions. 2006. (Unpublished Work)
140. Staton AD, Kurian AW, Cobb K, Mills MA, Ford JM (2008) Cancer risk reduction and reproductive concerns in female BRCA1/2 mutation carriers. Fam Cancer 7:179-186
141. Lammens C, Bleiker E, Aaronson N, Vriends A, Ausems M, Jansweijer M, Wagner A, Sijmons R, van den Ouweland A, van der Luijt R, Spruijt L, Gomez Garcia E, Ruijs M, Verhoef S (2009) Attitude towards pre-implantation genetic diagnosis for hereditary cancer. Fam Cancer 8:457-464
142. Marteau T, Michie S, Drake H, Bobrow M (1995) Public attitudes towards the selection of desirable characteristics in children. J Med Genet 32:796-798
143. Genetics and Public Policy Center. Americans deeply divided about use of genetic technologies in reproduction. 2004. Princeton Survey Research Associates
144. Daina G, Ramos L, Obradors A, Rius M, Martinez-Pasarell O, Pol