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.

Highlights

  • Patients at higher than average risk of heritable cancer may process risk information differently than the general population

  • Compared to cancer risk perception in the general population, experiencing a close family member going through treatment for cancer or having a known genetic susceptibility to cancer has life-altering implications, including how one processes risk information [3]

  • At-risk family members or those with known mutations may have to make important decisions based upon their risk perceptions, including whether to undergo prophylactic surgery or subsequent genetic testing, whether to disclose test results to family members, or whether to participate in experimental cancer screening

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Summary

Introduction

Patients at higher than average risk of heritable cancer may process risk information differently than the general population. Perceived risk is an important subjective psychological phenomenon related to threat appraisal that is closely intertwined with judgments about susceptibility to disease as well as the probability of benefit from interventions [1] It remains an integral component of several theories of health behavior (e.g. the Health Belief Model, the Precaution Adoption Model, or the Transactional Model of Stress and Coping) [2]. In a recent narrative review, Klein and Stefanek discuss the role of innumeracy, heuristics, motivational factors, and emotional influences in shaping risk perception and the implications for cancer risk perception [4] They conclude that the psychology of risk perception should elicit caution among clinicians hoping to accurately convey risk information to patients and call for a research strategy that spans the fields of medical decision-making and health communication

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