The withdrawal from oncogenetic counselling and testing for hereditary and familial breast and ovarian cancer. A descriptive study of an Italian sample.
BACKGROUND
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 aim of this study was to describe the psychosocial variables of an Italian sample that forgoes genetic counselling.


METHODS
From 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.


RESULTS
The 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.


CONCLUSIONS
The study revealed the importance to ac knowledging the whole persona and their family system as well as provide information highlighting usefulness of early diagnosis.
Caruso
Anita
A
Prevention and Training Activities in Psycho-Oncology, Regina Elena National Cancer Institute, Via Elio Chianesi 53, 00144 Rome, Italy. caruso@ifo.it
Vigna
Cristina
C
Maggi
Gabriella
G
Sega
Fabio Massimo
FM
Cognetti
Francesco
F
Savarese
Antonella
A
D000328:Adult; D000368:Aged; D001007:Anxiety / Q000523:psychology; D001943:Breast Neoplasms / Q000235:genetics* / Q000523:psychology*; D003863:Depression / Q000523:psychology; D005190:Family; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005817:Genetic Counseling / Q000523:psychology*; D020022:Genetic Predisposition to Disease; D006801:Humans; D007558:Italy; D008297:Male; D008875:Middle Aged; D010051:Ovarian Neoplasms / Q000235:genetics* / Q000523:psychology*; D013315:Stress, Psychological