Cancer worries, risk perceptions and associations with interest in DNA testing and clinic satisfaction in a familial colorectal cancer clinic

Abstract

Multi-disciplinary familial cancer clinics are becoming an integral part of cancer services. It is, therefore, important to assess how attendance at these clinics impacts on cancer-related concerns, risk perceptions and behavioural intentions, and how the clinic services are being received by those using them. This study has assessed a familial colorectal cancer clinic with respect to cancer-related worries and risk perceptions and their impact on interest in DNA testing and overall satisfaction with the clinic. Pre- and post-clinic questionnaires were completed by 127 patients and relatives attending the clinic. After attending the clinic, the proportion of people 'very' or 'extremely' worried about developing bowel cancer reduced from 49 (pre-clinic) to 34% (p = 0.002). Worry about bowel cancer was positively associated with younger age, higher education level and higher perceived risk of developing cancer. A reduction in level of risk perception correlated with a lower likelihood of feeling 'very worried' about developing bowel cancer. Of those intending to go ahead with DNA testing, 58% were 'very worried' about bowel cancer compared with 15% of those not intending to proceed with testing, suggesting that worry was a motivation for interest in DNA testing. One-third of participants indicated another session of genetic counselling would be helpful. Within this group, a higher proportion was very worried about bowel cancer (43%) than for those who did not want another session (17%). Attendance at this familial colorectal cancer clinic alleviated worry for many individuals, partly due to improved information about risk of colorectal cancer.

Psychiatric implications of cancer genetic testing

“…The most robust predictor of future distress is distress at baseline. 32,49,[57][58][59]68,[74][75][76][77] Additional risk factors include prior psychiatric history of depression, 74 history of using psychotropic medications, 75 passive or avoidant coping styles, 51,75,[80][81][82] or inaccurate risk perception, [85][86][87] which put individuals at risk of experiencing distress throughout the process or many years after receiving their results. Other important risk factors for future distress include being the first member of the family to obtain genetic testing, 33 having children, 76 experiencing the death of a relative from hereditary cancer, 34,78 as well as experiencing unresolved loss 5 and complicated grief.…”

“…Attention to an individual's experience and story of grief and loss is important, because it may affect the accuracy of their risk perception 78 ; and, if these losses continue to be unresolved, then it places them at higher risk of distress throughout the genetic testing process. [85][86][87] No single mental health intervention or recommendation can meet the needs of all individuals who participate in cancer genetic testing. These needs can vary from assistance with decision making to helping manage psychiatric symptoms that could complicate the process.…”

“…Initial genetic counseling interviews could include a thorough history covering the many potential risk factors for immediate or future distress, including current distress, past psychiatric history, past family history, and accuracy of risk perception. [84][85][86][87] If concerns are noted, then the genetic counselor could ask patients, "Would you like to speak with a social worker or psychologist?" 124 Several screening instruments also are available, offering another option to assess psychosocial needs.…”

“…84 In that review, the authors noted that, in several studies, the overestimation of risk was associated with greater distress, 85,86 and perceived risk was directly associated with worry in breast and ovarian cancer as well as colorectal cancer. 87 Therefore, ensuring that individuals have an accurate cancer risk perception during the genetic testing process is an important but often difficult task. For example, a 2009 retrospective study of women who were previously tested for BRCA1/BRCA2 indicated that only 0% to 30% of all participants accurately recalled and interpreted their cancer risks and heredity likelihood, and approximately 25% overestimated and 20% underestimated their risks after genetic counseling (Table 2).…”

A Systematic Review of the Impact of Genetic Counseling on Risk Perception Accuracy

“…Studies should examine the effect of genetic counseling on risk perception accuracy; that is, should explicitly link perceived risk to objective risk estimates to examine whether they more closely align after (rather than before) counseling. Studies were excluded if they examined changes in risk perception without linking them to some objective risk estimate (n=19; e.g., Burke et al 2000), if they investigated risk perception as a determinant of genetic counseling participation (n=6; e.g., Collins et al 2000), or if they focused on the effectiveness of decision aids as compared to standard genetic counseling (n=3; e.g., Warner et al 2003). 4.…”