Risk perception, screening practice and interest in genetic testing among unaffected men in families with hereditary prostate cancer.

Approximately 5-10% of prostate cancer cases are caused by dominantly inherited susceptibility to the disease. Although advances have been made in research concerning the genetic mechanisms of hereditary prostate cancer, little is known about the psychological consequences for men at high risk of developing the disease. The aims of the present study were to examine risk perception, interest in genetic investigations, cancer-specific worry, and screening practice among unaffected men, aged 40-72 years old, with a pedigree consistent with hereditary prostate cancer and an estimated lifetime risk of prostate cancer of 35-45%. A questionnaire was sent by mail to 120 subjects, of whom 110 responded. Most of the men (n = 90, 82%) worried about having an inherited susceptibility to prostate cancer, and 34 (31%) claimed that worry about prostate cancer affected their daily life (3 (3%) fairly much, 31 (28%) slightly). As many as 40% of the study subjects perceived their lifetime risk of prostate cancer as 67% or more. Perceived high risk was associated with symptoms of depression and with cancer worry affecting daily living. Two-thirds of the men aged 50 years old or more were regularly screened for prostate cancer. Subjects with high levels of cancer-specific stress, as measured by the avoidance subscale of the Impact of Event Scale, were less likely to opt for screening. Almost all of the men (94%) were interested in presymptomatic genetic testing (84 (76%) "definitely yes" and 20 (18%) "probably yes"). We conclude that hereditary susceptibility to prostate cancer has significant psychological consequences although it rarely causes psychiatric morbidity. The present study underlines the importance of giving thorough, repeated information to men at high risk of prostate cancer.

[1]  D A Meyers,et al.  Major Susceptibility Locus for Prostate Cancer on Chromosome 1 Suggested by a Genome-Wide Search , 1996, Science.

[2]  E. Thomson,et al.  Recommendations for Follow-up Care of Individuals With an Inherited Predisposition to Cancer: I. Hereditary Nonpolyposis Colon Cancer , 1997 .

[3]  S. Rubin,et al.  Efficacy of screening mammography. A meta-analysis. , 1995, JAMA.

[4]  W. Vogel,et al.  Predisposing gene for early-onset prostate cancer, localized on chromosome 1q42.2-43. , 1998, American journal of human genetics.

[5]  H. Grönberg,et al.  Familial prostate cancer in sweden: A nationwide register cohort study , 1996, Cancer.

[6]  E. Thomson,et al.  Recommendations for follow-up care of individuals with an inherited predisposition to Cancer. II. BRCA1 and BRCA2 , 1997 .

[7]  M. Stefanek,et al.  Younger women at increased risk for breast cancer: perceived risk, psychological well-being, and surveillance behavior. , 1994, Journal of the National Cancer Institute. Monographs.

[8]  R. Snaith,et al.  The Hospital Anxiety and Depression Scale , 1983 .

[9]  J. Ormel,et al.  A validation study of the Hospital Anxiety and Depression Scale (HADS) in different groups of Dutch subjects , 1997, Psychological Medicine.

[10]  M. Horowitz,et al.  Impact of Event Scale: A Measure of Subjective Stress , 1979, Psychosomatic medicine.

[11]  D. Schaid,et al.  Evidence for autosomal dominant inheritance of prostate cancer. , 1998, American journal of human genetics.

[12]  R. Croyle,et al.  Psychologic aspects of cancer genetic testing , 1997, Cancer.

[13]  M. Daly,et al.  Attitudes about genetic testing for breast-ovarian cancer susceptibility. , 1994, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[14]  H. Olsson,et al.  The risk of malignant tumours in first-degree relatives of men with early onset prostate cancer: a population-based cohort study. , 1997, European journal of cancer.

[15]  B. Ponder Genetic predisposition to cancer. , 1991, British Journal of Cancer.

[16]  B. Rimer,et al.  Effects of individualized breast cancer risk counseling: a randomized trial. , 1995, Journal of the National Cancer Institute.

[17]  J. Holland,et al.  Psychological distress and surveillance behaviors of women with a family history of breast cancer. , 1992, Journal of the National Cancer Institute.

[18]  H. Olsson,et al.  Familial and hereditary prostate cancer in southern Sweden. A population-based case-control study. , 1999, European journal of cancer.

[19]  R. Eeles,et al.  Familial breast cancer: a controlled study of risk perception, psychological morbidity and health beliefs in women attending for genetic counselling. , 1996, British Journal of Cancer.

[20]  R. Eeles,et al.  Family history of breast cancer: what do women understand and recall about their genetic risk? , 1998, Journal of medical genetics.

[21]  L. Laliberte,et al.  Family history of breast cancer. Impact on the disease experience. , 2000, Cancer practice.

[22]  C. Lerman,et al.  Interest in genetic testing among first-degree relatives of breast cancer patients. , 1995, American journal of medical genetics.

[23]  Y. Bignon,et al.  Attitudes towards cancer predictive testing and transmission of information to the family. , 1996, Journal of medical genetics.

[24]  K. Brown,et al.  Perception of breast cancer risk and psychological distress in women attending a surveillance program , 1996 .

[25]  I. Janis,et al.  Effect of fear-arousing communications. , 1953, Journal of abnormal psychology.

[26]  J. Lisspers,et al.  Hospital Anxiety and Depression Scale (HAD): some psychometric data for a Swedish sample , 1997, Acta psychiatrica Scandinavica.

[27]  P. Engstrom,et al.  Mammography adherence and psychological distress among women at risk for breast cancer. , 1993, Journal of the National Cancer Institute.

[28]  B. Rimer,et al.  Cancer risk notification: psychosocial and ethical implications. , 1991, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[29]  H. Olsson,et al.  Sons of men with prostate cancer: their attitudes regarding possible inheritance of prostate cancer, screening, and genetic testing. , 1997, Urology.

[30]  D C Slawson,et al.  Efficacy of screening mammography. , 1995, The Journal of family practice.

[31]  J. Struewing,et al.  Anticipated uptake and impact of genetic testing in hereditary breast and ovarian cancer families. , 1995, Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology.

[32]  T. Beaty,et al.  Mendelian inheritance of familial prostate cancer. , 1992, Proceedings of the National Academy of Sciences of the United States of America.

[33]  S. Narod,et al.  What you don't know can hurt you: adverse psychologic effects in members of BRCA1-linked and BRCA2-linked families who decline genetic testing. , 1998, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[34]  H. Grönberg,et al.  Segregation analysis of prostate cancer in Sweden: support for dominant inheritance. , 1997, American journal of epidemiology.

[35]  F. Collins,et al.  Evidence for a prostate cancer susceptibility locus on the X chromosome. , 1998, Nature Genetics.

[36]  Mccaul Kd,et al.  Naive beliefs about breast cancer risk. , 1998 .

[37]  J. Ward,et al.  Men's estimates of prostate cancer risk and self‐reported rates of screening , 1997, The Medical journal of Australia.

[38]  A. Howell,et al.  Perception of risk in women with a family history of breast cancer. , 1993, British Journal of Cancer.