Surveillance for hereditary cancer: Does the benefit outweigh the psychological burden?-A systematic review

Critical Reviews in Oncology/Hematology

Volumn 83, Issue 3, 2012, Pages 329-340

  Gopie, Jessica P ^a   Vasen, Hans F A ^a,b   Tibben, Aad ^a,c  

^a LEIDEN UNIVERSITY MEDICAL CENTER   (Netherlands)

^b Foundation for the Detection of Hereditary Tumours   (Netherlands)

^c ERASMUS MEDICAL CENTER   (Netherlands)

Author keywords

Distress; Familial cancer; Genetic risk; Hereditary cancer; Psychological burden; Quality of life; Screening; Surveillance

Indexed keywords

BREAST CANCER; BRIEF SYMPTOM INVENTORY; CANCER RISK; CANCER SCREENING; CANCER WORRY SCALE; CENTER FOR EPIDEMIOLOGICAL STUDIES DEPRESSION SCALE; COLORECTAL CANCER; COPING BEHAVIOR; DISTRESS SYNDROME; EORTC QLQ C30 QUESTIONNAIRE; FAMILIAL ADENOMATOUS POLYPOSIS; FAMILIAL CANCER; GENETIC RISK; HEREDITARY NONPOLYPOSIS COLORECTAL CANCER; HOSPITAL ANXIETY AND DEPRESSION SCALE; HUMAN; IMPACT OF EVENTS SCALE; MELANOMA; MULTIPLE CANCER; MULTIPLE ENDOCRINE NEOPLASIA; OVARY CANCER; PANCREAS CANCER; PEUTZ JEGHERS SYNDROME; PROSTATE CANCER; PSYCHOLOGICAL CONSEQUENCES QUESTIONNAIRE; QUALITY OF LIFE; QUESTIONNAIRE; RATING SCALE; REVIEW; SEX DIFFERENCE; SHORT FORM 36; SOCIAL SUPPORT; SYMPTOM CHECKLIST 90; SYSTEMATIC REVIEW; VON HIPPEL LINDAU DISEASE;

EID: 84864944363     PISSN: 10408428     EISSN: 18790461     Source Type: Journal    
DOI: 10.1016/j.critrevonc.2012.01.004     Document Type: Review

References (63)

1. Wilson J.M.G., Jungner G. Principles and practice of screening for disease. WHO Chronicle 1968, 22:473.
2. 1-6-2011. Internet Communication. http://www.patient.co.uk/doctor/Screening.htm.
3. Jarvinen H.J., Aarnio M., Mustonen H., et al. Controlled 15-year trial on screening for colorectal cancer in families with hereditary nonpolyposis colorectal cancer. Gastroenterology 2000, 118:829-834.
4. Kriege M., Brekelmans C.T.M., Boetes C., et al. Efficacy of MRI and mammography for breast-cancer screening in women with a familial or genetic predisposition. New England Journal of Medicine 2004, 351:427-437.
5. van der Velde N.M., Mourits M.J.E., Arts H.J.G., et al. Time to stop ovarian cancer screening in BRCA1/2 mutation carriers?. International Journal of Cancer 2009, 124:919-923.
6. Kiemeney L.A., Broeders M.J., Pelger M., et al. Screening for prostate cancer in Dutch hereditary prostate cancer families. International Journal of Cancer 2008, 122:871-876.
7. van der Rhee J.I., de Snoo F.A., Vasen H.F.A., et al. Effectiveness and causes for failure of surveillance of CDKN2A-mutated melanoma families. Journal of the American Academy of Dermatology 2011, 65:289-296.
8. Vasen H.F.A., Wasser M., van Mil A., et al. Magnetic resonance imaging surveillance detects early-stage pancreatic cancer in carriers of a p16-leiden mutation. Gastroenterology 2011, 140:850-856.
9. Pieterman C.R.C., Schreinemakers J.M.J., Koppeschaar H.P.F., et al. Multiple endocrine neoplasia type 1 (MEN1): its manifestations and effect of genetic screening on clinical outcome. Clinical Endocrinology 2009, 70:575-581.
10. Bulow S. Results of national registration of familial adenomatous polyposis. Gut 2003, 52:742-746.
11. Watson E.K., Henderson B.J., Brett J., Bankhead C., Austoker J. The psychological impact of mammographic screening on women with a family history of breast cancer - a systematic review. Psycho-Oncology 2005, 14:939-948.
12. Lerman C., Daly M., Masny A., Balshem A. Attitudes about genetic testing for breast-ovarian cancer susceptibility. Journal of Clinical Oncology 1994, 12:843-850.
13. Lerman C., Trock B., Rimer B.K., et al. Psychological and behavioral-implications of abnormal mammograms. Annals of Internal Medicine 1991, 114:657-661.
14. Lerman C., Trock B., Rimer B.K., et al. Psychological side-effects of breast-cancer screening. Health Psychology 1991, 10:259-267.
15. Lerman C., Lustbader E., Rimer B., et al. Effects of individualized breast cancer risk counseling: a randomized trial. Journal of the National Cancer Institute 1995, 87:286-292.
16. Watson M., Duvivier V., Wade Walsh M., et al. Family history of breast cancer: what do women understand and recall about their genetic risk?. Journal of Medical Genetics 1998, 35:731-738.
17. Douma K.F.L., Aaronson N.K., Vasen H.F.A., et al. Psychological distress and use of psychosocial support in familial adenomatous polyposis. Psycho-Oncology 2010, 19:289-298.
18. Lammens C.R.M., Aaronson N.K., Wagner A., et al. Genetic testing in Li-Fraumeni syndrome: uptake and psychosocial consequences. Journal of Clinical Oncology 2010, 28:3008-3014.
19. Horowitz M.J. Stress response syndromes and their treatment. Handbook of stress. theoretical and clinical aspects 1982, 711-732. The Free Press, New York. 1st ed. L. Goldberger, S. Breznitz (Eds.).
20. Horowitz M., Wilner N., Alvarez W. Impact of Event Scale - measure of subjective stress. Psychosomatic Medicine 1979, 41:209-218.
21. Joseph S. Psychometric evaluation of Horowitz's Impact of Event Scale: a review. Journal of Traumatic Stress 2000, 13:101-113.
22. Zigmond A.S., Snaith R.P. The Hospital Anxiety and Depression Scale. Acta Psychiatrica Scandinavica 1983, 67:361-370.
23. Spielberger C.D., Gorush R.L., Lushene R.E. State trait anxiety inventory manual 1970, Consulting Psychologists Press, Palo Alto, CA.
24. Derogatis L.R., Melisaratos N. The Brief Symptom Inventory: an introductory report. Psychological Medicine 1983, 13:595-605.
25. Radloff L.S. The CES-D Scale. Applied Psychological Measurement 1977, 1:385-401.
26. Ware J.E., Sherbourne C.D. The Mos 36-Item Short-Form Health Survey (Sf-36). 1: conceptual-framework and item selection. Medical Care 1992, 30:473-483.
27. Ware J.E. SF-36 health survey update. Spine 2000, 25:3130-3139.
28. Brooks R. EuroQol: the current state of play. Health Policy 1996, 37:53-72.
29. Derogatis L.R., Lipman R.S., Covi L. SCL-90: an outpatient psychiatric rating scale - preliminary report. Psychopharmacology Bulletin 1973, 9:13-28.
30. Aaronson N.K., Ahmedzai S., Bergman B., et al. The European-Organization-For-Research-And-Treatment-Of-Cancer Qlq-C30 - a quality-of-life instrument for use in international clinical-trials in oncology. Journal of the National Cancer Institute 1993, 85:365-376.
31. Cockburn J., Deluise T., Hurley S., Clover K. Development and validation of the Pcq - a questionnaire to measure the psychological consequences of screening mammography. Social Science and Medicine 1992, 34:1129-1134.
32. Rijnsburger A.J., Essink-Bot M.L., van Dooren S., et al. Impact of screening for breast cancer in high-risk women on health-related quality of life. British Journal of Cancer 2004, 91:69-76.
33. Tyndel S., Austoker J., Henderson B.J., et al. What is the psychological impact of mammographic screening on younger women with a family history of breast cancer? Findings from a prospective cohort study by the PIMMS management group. Journal of Clinical Oncology 2007, 25:3823-3830.
34. van Dooren S., Seynaeve C., Rijnsburger A.J., et al. Exploring the course of psychological distress around two successive control visits in women at hereditary risk of breast cancer. European Journal of Cancer 2005, 41:1416-1425.
35. Madalinska J.B., Hollenstein J., Bleiker E., et al. Quality-of-life effects of prophylactic salpingo-oophorectomy versus gynecologic screening among women at increased risk of hereditary ovarian cancer. Journal of Clinical Oncology 2005, 23:6890-6898.
36. Bleiker E.M.A., Menko F.H., Kluijt I., et al. Colorectal cancer in the family: psychosocial distress and social issues in the years following genetic counselling. Hereditary Cancer in Clinical Practice 2007, 5:59-66.
37. Bleiker E.M.A., Menko F.H., Taal B.G., et al. Screening behavior of individuals at high risk for colorectal cancer. Gastroenterology 2005, 128:280-287.
38. Liljegren A., Lindgren G., Brandberg Y., et al. Individuals with an increased risk of colorectal cancer: perceived benefits and psychological aspects of surveillance by means of regular coloscopies. Journal of Clinical Oncology 2004, 22:1736-1742.
39. Wagner A., van Kessel I., Kriege M.G., et al. Long term follow-up of HNPCC gene mutation carriers: compliance with screening and satisfaction with counseling and screening procedures. Familial Cancer 2005, 4:295-300.
40. Aktan-Collan K., Haukkala A., Mecklin J.P., Uutela A., Kaariainen H. Psychological consequences of predictive genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): a prospective follow-up study. International Journal of Cancer 2001, 93:608-611.
41. Kasparian N.A., McLoone J.K., Meiser B., et al. Skin cancer screening behaviours among individuals with a strong family history of malignant melanoma. British Journal of Cancer 2010, 103:1502-1509.
42. Riedijk S.R., de Snoo F.A., van Dijk S., et al. Hereditary melanoma and predictive genetic testing: why not?. Psycho-Oncology 2005, 14:738-745.
43. Maheu C., Vodermaier A., Rothenmund H., et al. Pancreatic cancer risk counselling and screening: impact on perceived risk and psychological functioning. Familial Cancer 2010, 9:617-624.
44. Harinck F., Nagtegaal T., Kluijt I., et al. Feasibility of a pancreatic cancer surveillance program from a psychological point of view. Genetics in Medicine 2011, 13:1015-1024.
45. Lammens C.R.M., Bleiker E.M.A., Verhoef S., et al. Psychosocial impact of Von Hippel-Lindau disease: levels and sources of distress. Clinical Genetics 2010, 77:483-491.
46. van Lier M.G.F., Mathus-Vliegen E.M.H., van Leerdam M.E., et al. Quality of life and psychological distress in patients with Peutz-Jeghers syndrome. Clinical Genetics 2010, 78:219-226.
47. Woo A., Sadana A., Mauger D.T., et al. Psychosocial impact of Peutz-Jeghers syndrome. Familial Cancer 2009, 8:59-65.
48. Berglund G., Liden A., Hansson M.G., et al. Quality of life in patients with multiple endocrine neoplasia type 1 (MEN1). Familial Cancer 2003, 2:27-33.
49. Douma K.F.L., Bleiker E.M.A., Vasen H.F.A., Gundy C.M., Aaronson N.K. Quality of life and consequences for daily life of familial adenomatous polyposis (FAP) family members. Colorectal Disease 2011, 13:669-677.
50. Kasparian N.A., Meiser B., Butow P.N., Simpson J.M., Mann G.J. Predictors of psychological distress among individuals with a strong family history of malignant melanoma. Clinical Genetics 2008, 73:121-131.
51. Erblich J., Bovbjerg D.H., Valdimarsdottir H.B. Looking forward and back: distress among women at familial risk for breast cancer. Annals of Behavioral Medicine 2000, 22:53-59.
52. Brain K., Henderson B.J., Tyndel S., et al. Predictors of breast cancer-related distress following mammography screening in younger women on a family history breast screening programme. Psycho-Oncology 2008, 17:1180-1188.
53. Zakowski S.G., Valdimarsdottir H.B., Bovbjerg D.H., et al. Predictors of intrusive thoughts and avoidance in women with family histories of breast cancer. Annals of Behavioral Medicine 1997, 19:362-369.
54. van Dooren S., Rijnsburger A.J., Seynaeve C., et al. Psychological distress and breast self-examination frequency in women at increased risk for hereditary or familial breast cancer. Community Genetics 2003, 6:235-241.
55. Andrews L., Mireskandari S., Jessen J., et al. Impact of familial adenomatous polyposis on young, adults: quality of life outcomes. Diseases of the Colon and Rectum 2007, 50:1306-1315.
56. Pieterse K., van Dooren S., Seynaeve C., et al. Passive coping and psychological distress in women adhering to regular breast cancer surveillance. Psycho-Oncology 2007, 16:851-858.
57. Kash K.M., Holland J.C., Halper M.S., Miller D.G. Psychological distress and surveillance behaviors of women with a family history of breast-cancer. Journal of the National Cancer Institute 1992, 84:24-30.
58. van Dooren S., Rijnsburger A.J., Seynaeve C., et al. Psychological distress in women at increased risk for breast cancer: the role of risk perception. European Journal of Cancer 2004, 40:2056-2063.
59. Pylvanainen K., Kairaluoma M., Mecklin J.P. Compliance and satisfaction with long-term surveillance in Finnish HNPCC families. Familial Cancer 2006, 5:175-178.
60. Huang M., Sun C., Boyd-Rogers S., et al. Prospective study of combined colon and endometrial cancer screening in women with lynch syndrome: a patient-centered approach. Journal of Oncology Practice 2011, 7:43-47.
61. Vansenne F., Bossuyt P.M.M., de Borgie C.A.J.M. Evaluating the psychological effects of genetic testing in symptomatic patients: a systematic review. Genetic Testing and Molecular Biomarkers 2009, 13:555-563.
62. Vadaparampil S.T., Miree C.A., Wilson C., Jacobsen P.B. Psychosocial and behavioral impact of genetic counseling and testing. Breast Disease 2006, 27:97-108.
63. Douma K.F.L., Aaronson N.K., Vasen H.F.A., Bleiker E.M.A. Psychosocial issues in genetic testing for familial adenomatous polyposis: a review of the literature. Psycho-Oncology 2008, 17:737-745.