Abstract
BackgroundOncogenetic counselling is seldom followed through, even when individuals are eligible according to the test criteria. The basic variables which influence the decision to undergo the genetic counselling process are: risk perception, expected benefit or limitations of genetic testing, general psychological distress or cancer-specific distress, lack of trust in one's emotional reactions when faced with negative events, expected level of family support and communications within the family. The aim of this study was to describe the psychosocial variables of an Italian sample that forgoes genetic counselling.MethodsFrom May 2002 to December 2006 a psychological questionnaire was sent out to one hundred and six subjects, who freely requested a first genetic informative consultation, and never asked to have a second visit and the family tree drawn up in order to inquire about their eligibility for genetic testing. Statistical analysis was performed by Pearson chi-square test, t-test and Spearman RHO coefficient.ResultsThe survey presents a lack of emotional cohesion and structured roles and rules within the family system and a positive correlation between the number of children, anxiety and risk perception. The main reasons for giving up on counselling were a sense that testing was a waste of time and the inability to emotionally handle the negative consequences of the test outcome. The subjects who maintained that test and an early diagnosis were a "waste of time" experienced more anxiety.ConclusionThe study revealed the importance to ac knowledging the whole persona and their family system as well as provide information highlighting usefulness of early diagnosis.
Highlights
Oncogenetic counselling is seldom followed through, even when individuals are eligible according to the test criteria
The basic variables which influence the decision to undergo the genetic counselling process are: risk perception, expected benefit or limitations of genetic testing, general psychological distress or cancer-specific distress, lack of trust in one's emotional reactions when faced with negative events, expected level of family support and communications within the family
The literature concerning the psychological side of oncogenetic counselling often focuses on the variables which influence the decision to undergo the test and show some basic variables such as; estimated cancer risk [2,5], expected benefit or limitations of genetic testing, [6,7,8], general psychological distress or cancer-specific distress [7,9], lack of trust in one's emotional reactions when faced with negative events[10], expected level of family support and communications within the family[11,12,13]
Summary
Oncogenetic counselling is seldom followed through, even when individuals are eligible according to the test criteria. The literature concerning the psychological side of oncogenetic counselling often focuses on the variables which influence the decision to undergo the test and show some basic variables such as; estimated cancer risk [2,5], expected benefit or limitations of genetic testing, [6,7,8], general psychological distress or cancer-specific distress [7,9], lack of trust in one's emotional reactions when faced with negative events[10], expected level of family support and communications within the family[11,12,13]. The present study aims at describing some psychosocial variables in an Italian group of patients who interrupted the process of genetic counselling for hereditary/familial breast/ovarian cancer, following an initial informative session. It aims at evaluating motivations, reported by the subjects themselves, which have led to their decision to discontinue the process of counselling and probable association between motivation and psychosocial variables
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