Cancer patients who experienced diagnostic genetic testing for cancer susceptibility: reactions and behavior after the disclosure of a positive test result.
The aim of this prospective study was to evaluate the consequences of the disclosure of a positive genetic test result to patients affected with cancer. Personal repercussions and patients' behavior with the transmission of their results to relatives were considered. We conducted semistructured interviews with 23 cancer patients identified as carriers of a cancer-predisposing mutation for hereditary breast ovarian or nonpolyposis colorectal cancers, 1 month after the disclosure of the test result. Eight patients spontaneously expressed distressed reactions ("you no longer feel cured"), and 14 patients reported at least one negative feeling (dissatisfied, discouraged, unhappy, or worried), despite expecting to be a carrier. Sixteen patients expressed concerns about the risk of developing another cancer, and 18 were concerned for their children's future, in that they may carry the mutation and develop a cancer. Although 8 patients found that disadvantages of knowing their genetic status outweighed the advantages, all but 1 did not regret having undergone genetic testing. All of the patients transmitted their results to at least one close relative. Although 6 of them expressed difficulties in being the only person who could transmit the information and 9 said it was a heavy responsibility, all except 1 did not want someone else to have to inform their families. Our results illustrate the potential negative impact of diagnostic genetic testing in patients with cancer. This includes distressed reactions and difficulties in transmitting their results to relatives. Future large-scale studies are warranted to confirm our findings.
Bonadona
Valérie
V
Unit of Prevention and Genetic Epidemiology, Comprehensive Cancer Center Léon Bérard, 28 rue Laënnec, 69008 Lyon, France.
Saltel
Pierre
P
Desseigne
Françoise
F
Mignotte
Hervé
H
Saurin
Jean-Christophe
JC
Wang
Qing
Q
Sinilnikova
Olga
O
Giraud
Sophie
S
Freyer
Gilles
G
Plauchu
Henri
H
Puisieux
Alain
A
Lasset
Christine
C
D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D001943:Breast Neoplasms / Q000175:diagnosis / Q000235:genetics* / Q000523:psychology; D015179:Colorectal Neoplasms / Q000175:diagnosis / Q000235:genetics* / Q000523:psychology; D005190:Family / Q000523:psychology; D005260:Female; D005602:France; D020022:Genetic Predisposition to Disease / Q000523:psychology*; D005820:Genetic Testing / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D009154:Mutation / Q000235:genetics*; D010051:Ovarian Neoplasms / Q000175:diagnosis / Q000235:genetics* / Q000523:psychology; D010358:Patient Participation; D011336:Probability; D011446:Prospective Studies; D013315:Stress, Psychological; D011795:Surveys and Questionnaires