Factors Influencing Cancer Risk Perception in High Risk Populations: A Systematic Review

Abstract

BackgroundPatients at higher than average risk of heritable cancer may process risk information differently than the general population. However, little is known about clinical, demographic, or psychosocial predictors that may impact risk perception in these groups. The objective of this study was to characterize factors associated with perceived risk of developing cancer in groups at high risk for cancer based on genetics or family history.MethodsWe searched Ovid MEDLINE, Ovid Embase, Ovid PsycInfo, and Scopus from inception through April 2009 for English-language, original investigations in humans using core concepts of "risk" and "cancer." We abstracted key information and then further restricted articles dealing with perceived risk of developing cancer due to inherited risk.ResultsOf 1028 titles identified, 53 articles met our criteria. Most (92%) used an observational design and focused on women (70%) with a family history of or contemplating genetic testing for breast cancer. Of the 53 studies, 36 focused on patients who had not had genetic testing for cancer risk, 17 included studies of patients who had undergone genetic testing for cancer risk. Family history of cancer, previous prophylactic tests and treatments, and younger age were associated with cancer risk perception. In addition, beliefs about the preventability and severity of cancer, personality factors such as "monitoring" personality, the ability to process numerical information, as well as distress/worry also were associated with cancer risk perception. Few studies addressed non-breast cancer or risk perception in specific demographic groups (e.g. elderly or minority groups) and few employed theory-driven analytic strategies to decipher interrelationships of factors.ConclusionsSeveral factors influence cancer risk perception in patients at elevated risk for cancer. The science of characterizing and improving risk perception in cancer for high risk groups, although evolving, is still relatively undeveloped in several key topic areas including cancers other than breast and in specific populations. Future rigorous risk perception research using experimental designs and focused on cancers other than breast would advance the field.

Psychiatric implications of cancer genetic testing

“…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.…”

“…A 2011 review by Tilburt et al identified several factors that were associated with influencing cancer risk perception in groups already at high risk for cancer based on genetics or family history: a family history of cancer, a monitoring personality style, elevated distress and worry, previous use of prophylactic tests and treatment, and younger age all were associated with cancer risk perception. 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.…”

Factors Affecting Breast Cancer Risk Perception in Women and Comparison of Risk Levels to the Gail Model

“…Bizim çalışmamızda lise ve üzerinde öğrenim görenler, normal ya da cerrahi nedenle menopoza girenler risklerini daha düşük algılamaktadır. Yapılan sistematik bir derlemede kadınların yaşı, ırkı, öğrenim durumu gibi sosyodemografik etmenlerin yanı sıra yaşam biçimi alışkanlıklarıyla meme kanseri risk algısı arasında ilişki bulunmuştur (16). Ülkemiz-de (30) ve diğer ülkelerde yapılan çalışmalarda yaş, öğrenim düze-yi, gelir düzeyi, kültür, meme kanseri kaygısı, ailede meme kanseri öyküsü, bireysel meme hastalığı öyküsü, kötü beslenme, egzersiz yapmama, sigara içme gibi değişkenlerle meme kanseri risk algısı arasında ilişki olduğu saptanmıştır (17,18,(25)(26)(27)(28)(29)(30) Çalışmamız toplumdan örnek seçilerek yapıldığından evrene genellenebilir.…”

“…Bu artışların kadınlarda meme kanseri farkındalığı ve risk algısı ile paralellik göstereceği beklenebilir. Araştırmalarda meme kanseri risk algısında pek çok etmenin rolü olduğu bulunmuştur (16,17). Yapılan çalışmalarda meme kanseri risk algısı ile ilişkili değişkenler ve meme kanseri risk algısıyla mamografi yaptırma ilişkisi (18)(19)(20)(21)(22)(23)(24)(25)(26)(27)(28)(29)(30)(31) incelenmiştir.…”

Risk Perception and Psychological Morbidity in Men at Elevated Risk for Prostate Cancer

“…By precisely defining the areas of distress that screening might aggravate, a decoupling of screening from the apprehensions that make the process psychologically invasive might be possible, thereby helping men to more clearly view screening in a positive light. Generalized elevation of risk perception is one dimension of cognitive distress that has been linked to at-risk identification in several forms of cancer [28][29][30] , and it is therefore a sound starting point for exploring screeningspecific distress.…”