Development of Psycho-educational Telephone (PET) Intervention for Managing Uncertainty for Individuals with Inconclusive BRCA 1/2 Genetic Testing Results

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Core Research Area
Bio-psychosocial Research
Principal Investigator
Christine Maheu
Mary Jane Esplen, Wendy Meschino, Joanne Honeyford, Xin Gao
The aims of this project are to develop, describe and standardize a psycho-educational telephone (PET) intervention that incorporates principles of stress-generated theory and genetic testing with theoretical concepts associated with managing uncertainty for individuals with a personal and family history of BC who test inconclusive for BRCA1/2 and to examine the impact of this intervention on pre-and post-intervention measures of: a) Psychosocial functioning (cancer-specific distress , distress associated with genetic testing , and general distress ); b) Uncertainty ; c) Knowledge about BC and Genetic risks; d) Intent to screen and screening behaviors. 2) To describe the relationship between psychosocial factors, demographic characteristics, uncertainty levels, BC and genetic risks knowledge and intent to screen and screening before and after the PET intervention and to identify potential predictive factors of improvement in psychological functioning, uncertainty, knowledge, intent to screen and screening adherence. Individuals undergoing genetic testing for BRCA1/2 have been recruited from North York General Hospital (NYGH) in Toronto. The study team works with the geneticists and genetic counselors to identity potential participants. In order to obtain baseline measures on people’s uncertainty and distress levels and to limit the possibility of divulging genetic results prior to their scheduled post-test counseling session, all individuals waiting for their results, regardless of test outcomes – positive, true-negative, inconclusive – have been sent an initial package with a letter describing the study and asking about interest in participating. Individuals have been asked to fill out a return slip indicating interest for more information. Interested participants  have received a second package with a consent form and baseline questionnaires. Once consent and baseline package is completed, participants who have received inconclusive results receive the second set of study measures within the first ten days following receipt of results. Once this second set of measures is received,  the self-management Psycho-educational intervention package is mailed within the same week. One month following receipt of self-management psycho-educational intervention package, individuals are contacted by telephone by a trained counselor. The telephone intervention represents the second step of the PET intervention. Follow up questionnaires are  mailed at 3 months of the completed intervention and again at 12 months.

Study Contact
Christine Maheu 416-581-8631