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Genetics of Prostate Cancer (PDQ®)

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Psychosocial Issues in Prostate Cancer

Introduction
Risk Perception
Anticipated Interest in Genetic Testing
Hereditary Prostate Cancer Families and Screening
        Screening behaviors
Quality of Life in Relation to Screening for Prostate Cancer Among Individuals at Increased Hereditary Risk



Introduction

Research to date has included survey, focus group, and correlation studies on psychosocial issues related to prostate cancer risk. (Refer to the PDQ summary on Cancer Genetics Risk Assessment and Counseling for more information about psychological issues related to genetic counseling for cancer risk assessment.) When it becomes available, genetic testing for mutations in prostate cancer susceptibility genes has the potential to identify those at highest risk, which facilitates risk-reducing interventions and early detection of prostate cancer. Having an understanding of the motivations of men who may consider genetic testing for inherited susceptibility to prostate cancer will help clinicians and researchers anticipate interest in testing. Further, these data will inform the nature and content of counseling strategies for men and their families, including consideration of the risks, benefits, decision-making issues, and informed consent for genetic testing.

Risk Perception

Knowledge about risk of prostate cancer is thought to be a factor influencing men’s decisions to pursue prostate cancer screening and, possibly, genetic testing.[1] A study of 79 African American men (38 of whom had been diagnosed with prostate cancer and the remainder who were unaffected but at high risk of prostate cancer) completed a nine-item telephone questionnaire assessing knowledge about hereditary prostate cancer. On a scale of 0 to 9, with 9 representing a perfect score, scores ranged from 3.5 to 9 with a mean score of 6.34. The three questions relating to genetic testing were the questions most likely to be incorrect. In contrast, questions related to inheritance of prostate cancer risk were answered correctly by the majority of subjects.[2] Overall, knowledge of hereditary prostate cancer was low, especially concepts of genetic susceptibility, indicating a need for increased education. An emerging body of literature is now exploring risk perception for prostate cancer among men with and without a family history. Table 15 provides a summary of studies examining prostate cancer risk perception.

Table 15. Summary of Cross-Sectional Studies of Prostate Cancer Risk Perception
Study Population Sample Size Proportion of Study Population That Accurately Reported Their Risk Other Findings 
FDR = first-degree relative.
Unaffected men with a family history of prostate cancer [3]120 men aged 40–72 y40%
FDR of men with prostate cancer [4]105 men aged 40–70 y62%
Men with brothers affected with prostate cancer [5]111 men aged 33–78 yNot available38% of men reported their risk of prostate cancer to be the same or less than the average man.
FDR of men with prostate cancer and a community sample [6]56 men with an FDR with prostate cancer and 100 men without an FDR with prostate cancer all older than 40 y57%29% of men with an FDR thought that they were at the same risk as the average man, and 14% believed that they were at somewhat lower risk than average.

Study conclusions vary regarding whether first-degree relatives (FDRs) of prostate cancer patients accurately estimate their prostate cancer risk. Some studies found that men with a family history of prostate cancer considered their risk to be the same as or less than that of the average man.[5,6] Other factors, including being married, have been associated with higher prostate cancer risk perception.[7] A confounder in prostate cancer risk perception was confusion between benign prostatic hyperplasia and prostate cancer.[3]

Anticipated Interest in Genetic Testing

A number of studies summarized in Table 16 have examined participants' interest in genetic testing, if such a test were available for clinical use. Factors found to positively influence the interest in genetic testing include the following:

  • Advice of their primary care physician.[8]
  • Combination of emotional distress and concern about prostate cancer treatment effects.[9]
  • Having children.[10]

Findings from these studies were not consistent regarding the influence of race, education, marital status, employment status, family history, and age on interest in genetic testing. Study participants expressed concerns about confidentiality of test results among employers, insurers, and family and stigmatization; potential loss of insurability; and the cost of the test.[8] These concerns are similar to those that have been reported in women contemplating genetic testing for breast cancer predisposition.[11-16] Concerns voiced about testing positive for a mutation in a prostate cancer susceptibility gene included decreased quality of life secondary to interference with sex life in the event of a cancer diagnosis, increased anxiety, and elevated stress.[8]

Table 16. Summary of Cross-Sectional Studies of Anticipated Interest in Prostate Cancer Susceptibility Genetic Testing
Study Population Sample Size Percent Expressing Interest in Genetic Testing Other Findings 
FDR = first-degree relative; PSA = prostate-specific antigen
Prostate screening clinic participants [17]342 men aged 40–97 y89%28% did not demonstrate an understanding of the concept of inherited predisposition to cancer.
General population; 9% with positive family history [8]12 focus groups with a total of 90 men aged 18–70 yAll focus groups
African American men [18]320 men aged 21–98 y87%Most participants could not distinguish between genetic susceptibility testing and a prostate-specific antigen blood test.
Men with and without FDRs with prostate cancer [9]126 men aged >40 y; mean age 52.6 y24% definitely; 50% probably
Swedish men with an FDR with prostate cancer [3]110 men aged 40–72 y76% definitely; 18% probably89% definitely or probably wanted their sons to undergo genetic testing.
Sons of Swedish men with prostate cancer [10]101 men aged 21–65 y90%; 100% of sons with two or three family members affected with prostate cancer60% expressed worry about having an increased risk of prostate cancer.
Healthy outpatient males with no history of prostate cancer [19]400 men aged 40–69 y82%
Healthy African American males with no history of prostate cancer [20]413 African American men aged 40–70 y87%Belief in the efficacy of and intention to undergo prostate cancer screening was associated with testing interest.
Healthy Australian males with no history of prostate cancer [21]473 adult men66% definitely; 26% probably73% reported that they felt diet could influence prostate cancer risk.
Males with prostate cancer and their unaffected male family members [22]559 men with prostate cancer; 370 unaffected male relatives45% of men affected with cancer; 56% of unaffected menIn affected men, younger age and test familiarity were predictors of genetic testing interest. In unaffected men, older age, test familiarity, and a PSA test within the last 5 y were predictors of genetic testing interest.

Overall, these reports and a study that developed a conceptual model to look at factors associated with intention to undergo genetic testing [23] have shown a significant interest in genetic testing for prostate cancer susceptibility despite concerns about confidentiality and potential discrimination. These findings must be interpreted cautiously in predicting actual prostate cancer genetic test uptake once testing is available. In both Huntington disease and hereditary breast and ovarian cancers, hypothetical interest before testing was possible was much higher than actual uptake following availability of the test.[24,25]

Hereditary Prostate Cancer Families and Screening

The proportion of prostate cancers attributed to hereditary causes is estimated to be 5% to 10%,[26] and the risk of prostate cancer increases with the number of blood relatives with prostate cancer and young age at onset of prostate cancer within families.[27] There is considerable controversy in prostate cancer about the use of serum prostate-specific antigen (PSA) measurement and digital rectal exam for prostate cancer early detection in the general population, with different organizations suggesting significantly different screening algorithms and age recommendations. (Refer to the PDQ summary on Prostate Cancer Treatment for more information about prostate cancer in the general population and the Interventions section of this summary for more information about inherited prostate cancer susceptibility.) This variation is likely to add to patient and provider confusion about recommendations for screening by members of hereditary cancer families or FDRs of prostate cancer patients. Psychosocial questions of interest include what individuals at increased risk understand about hereditary risk, whether informational interventions are associated with increased uptake of prostate cancer screening behaviors, and what the associated quality-of-life implications of screening are for individuals at increased risk. Also of interest is the role of the primary care provider in helping those at increased risk identify their risk and undergo age- and family-history–appropriate screening.

Screening behaviors

In most cancers, the goal of improved knowledge of hereditary risk can be translated rather easily into a desired increase in adherence to approved and recommended (if not proven) screening behaviors. This is complicated for prostate cancer screening by the lack of clear recommendations for men in both high-risk and general populations. (Refer to the Screening section of this summary for more information.) In addition, controversy exists with regard to the value of early diagnosis of prostate cancer. This creates uncertainty for patients and providers and challenges the psychosocial factors related to screening behavior.

Several small studies have examined the behavioral correlates of prostate cancer screening at average and increased prostate cancer risk based on family history; these are summarized in Table 17. In general, results appear contradictory regarding whether men with a family history are more likely to be screened than those not at risk and whether the screening is appropriate for their risk status. Furthermore, most of the studies had relatively small numbers of subjects, and the criteria for screening were not uniform, making generalization difficult.

Table 17. Summary of Studies of Behavioral Correlates for Prostate Cancer Screening
Study Population  Sample Size  Percent Undergoing Screening  Predictive Correlates for Screening Behavior  
AAHPC = African American Hereditary Prostate Cancer Study Network; DRE = digital rectal exam; FDR = first-degree relative; NHIS = National Health Interview Survey; PSA = prostate-specific antigen.
Unaffected men with at least one FDR with prostate cancer [28]82 men (aged ≥40 y; mean age 50.5 y)PSA: Aged >50 y.
Annual income ≥ U.S. $40,000.
50% reported PSA screening within the previous 14 mo.History of PSA screening before study enrollment.
Higher levels of self-efficacy and response efficacy for undergoing prostate cancer screening.
Sons of men with prostate cancer [29]124 men (60 men with a history of prostate cancer aged 38–84 y, median age 59 y; 64 unaffected men aged 31–78 y, median age 55 y)PSA: 39.4% patient request.
– Unaffected men: 95.3% reported ever having a PSA test.
– Affected men: 71.7% reported ever having a PSA test before diagnosis.
DRE:
– Unaffected men: 96.9% reported ever having a DRE.
– Affected men: 91.5% reported ever having a DRE before diagnosis.35.6% physician request.
Both PSA and DRE:
– Unaffected men: 93.8% had both procedures.
– Affected men: 70.0% reported having both procedures before diagnosis.
Unaffected men with and without an FDR with prostate cancer [6]156 men aged ≥40 y (56 men with an FDR; 100 men without an FDR)PSA: Older age.
63% reported ever having a PSA test.
FDRs reported higher disease vulnerability and less belief in disease prevention, but this did not result in increased prostate cancer screening when compared with those without an FDR.
DRE:
86% reported ever having a DRE.
Unaffected Swedish men from families with a 50% probability of carrying a mutation in a dominant prostate cancer susceptibility gene [3]110 men aged 50–72 y68% of men aged ≥50 y were screened for prostate cancer.More relatives with prostate cancer.
Low score on the avoidance subscales of the Impact of Event Scale.[30]
Brothers or sons of men with prostate cancer [31]136 men aged 40–70 y (72% were African American men)PSA: More relatives with prostate cancer.
72% reported ever having a PSA test.
– 73% within 1 y.Older age.
– 23% 1–2 y ago.
– 4% >2 y ago.
DRE: Urinary symptoms.
90% reported ever having had a DRE.
– 60% within 1 y.
– 23% 1–2 y ago.71% reported their physician had spoken to them about prostate cancer screening.
– 17% >2 y ago.
Unaffected men with and without an FDR with prostate cancer [32]166 men aged 40–80 y (83 men with an FDR; 83 men with no family history)PSA: Family history of prostate cancer.
– FDR: 72% reported ever having had a PSA test.
– No family history: 53% reported ever having had a PSA test.Greater perceived vulnerability to developing prostate cancer.
French brothers or sons of men with prostate cancer [33]420 men aged 40–70 yPSA: Younger age.
More relatives with prostate cancer.
Increased anxiety.
88% adhered to annual PSA screening.Married.
Higher education.
Previous history of prostate cancer screening.
Data from unaffected African American men participating in AAHPC and data from the 1998 and 2000 NHIS [34]Unaffected men aged 40–69 y:PSA: Younger age.
AAHPC Cohort:
– 45% reported ever having had a PSA test.
– AAHPC Cohort: 134 menAfrican American men in 2000 NHIS:
– 65% reported ever having had a PSA test.
DRE:
– NHIS 1998 Cohort: 5,583 men (683 African American, 4,900 white)AAHPC Cohort:Fewer relatives with prostate cancer.
– 35% reported ever having had a DRE.
African American men in 1998 NHIS:
– NHIS 2000 Cohort: 3,359 men (411 African American, 2,948 white)– 45% reported ever having had a DRE.
Unaffected African American men who participated in the 2000 NHIS [35]736 men aged ≥45 yPSA: Older age (≥50 y).
Private or military health insurance.
48% reported ever having had a PSA test.Fair or poor health status.
Family history of prostate cancer.

Quality of Life in Relation to Screening for Prostate Cancer Among Individuals at Increased Hereditary Risk

Concern about developing prostate cancer: Although up to 50% of men in some studies who were FDRs of prostate cancer patients expressed some concern about developing prostate cancer,[5] the level of anxiety reported is typically relatively low and is related to lifetime risk rather than short-term risk.[3,5] The concern is also higher in men who are younger than his FDR was at the time when their prostate cancer was diagnosed.[5] Unmarried FDRs worried more about developing prostate cancer than did married men.[5] Men with higher levels of concern about developing prostate cancer also had higher estimates of personal prostate cancer risk and had a larger number of relatives diagnosed with prostate cancer.[5] In a Swedish study, only 3% of the 110 men surveyed said that worry about prostate cancer affected their daily life “fairly much,” and 28% said it affected their daily life "slightly."[3]

Baseline distress levels: Among men who self-referred for free prostate cancer screening, general and prostate cancer–related distress did not differ significantly between men who were FDRs of prostate cancer patients and men who were not.[36] Men with a family history of prostate cancer in the study had higher levels of perceived risk. In a Swedish study, male FDRs of prostate cancer patients who reported more worry about developing prostate cancer had higher Hospital Anxiety and Depression Scale (HADS) depression and anxiety scores than men with lower levels of worry. In that study, the average HADS depression and anxiety scores among FDRs was at the 75th percentile. Depression was associated with higher levels of personal risk overestimation.[3]

Distress experienced during prostate cancer screening: A study measured the anxiety and general quality of life experienced by 220 men with a family history of prostate cancer while undergoing prostate cancer screening with PSA tests.[31] In this group, 20% of the men experienced a moderate deterioration in their anxiety scores, and 20% experienced a minimal deterioration in health-related quality of life (HRQOL). The average period between assessments was 35 days, which encompassed PSA testing and a wait for results that averaged 15.6 days. Only men with normal PSA values (4 ng/mL or less) were assessed. Factors associated with deterioration in HRQOL included being age 50 to 60 years, having more than two relatives with prostate cancer, having an anxious personality, being well-educated, and having no children presently living at home. These authors stress that analysis of the impact of screening on FDRs should not rely solely on mean changes in scores, which may “mask diversity among responses, as illustrated by the proportion of subjects worsening during the screening process.” Given that these were men receiving what was considered a normal result and that a subset of men experienced screening-associated distress, this study suggests that interventions to reduce screening-related distress may be needed to encourage men at increased hereditary risk to comply with repeated requests for screening.

A study in the United Kingdom assessed predictors of psychological morbidity and screening adherence in FDRs of men with prostate cancer participating in a PSA screening study. One hundred twenty-eight FDRs completed measures assessing psychological morbidity, barriers, benefits, knowledge of PSA screening, and perceived susceptibility to prostate cancer. Overall, 18 men (14%) scored above the threshold for psychiatric morbidity, consistent with normal population ranges. Cancer worry was positively associated with health anxiety, perceived risk, and subjective stress. However, psychological morbidity did not predict PSA screening adherence. Only past screening behavior was found to be associated with PSA screening adherence.[37]

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