"When information is not enough": A model for understanding BRCA-positive previvors' information needs regarding hereditary breast and ovarian cancer risk. Issue 9 (September 2017)

• Record Type: Journal Article
• Authors: Dean, Marleah; Scherr, Courtney L.; Clements, Meredith; Koruo, Rachel; Martinez, Jennifer; Ross, Amy
• Is Part Of: Patient education and counseling. Volume 100:Issue 9(2017)
• Page Start: 1738
• Page End: 1743
• Publication Date: 2017-09
• Subjects: BRCA -- Decision-making -- Hereditary breast and ovarian cancer -- Information -- Genetics -- Previvors -- Uncertainty; Patient education -- Periodicals; Health counseling -- Periodicals; Health education -- Periodicals; Counseling -- Periodicals; Patient Education -- Periodicals; Éducation des patients -- Périodiques; Counseling -- Périodiques; Éducation sanitaire -- Périodiques; 615.5071
• DOI: 10.1016/j.pec.2017.03.013
• Languages: English
• ISSNs: 0738-3991

Abstract

Graphical abstract: Highlights: Previvors are patients genetically predisposed to develop hereditary cancer. We conducted interviews with 25 previvors regarding their information needs. A four-stage model was created based on the interview data. The model may assist previvors and healthcare providers in managing genetic risk. Abstract: Objective: To investigate BRCA -positive, unaffected patients' – referred to as previvors – information needs after testing positive for a deleterious BRCA genetic mutation. Methods: 25 qualitative interviews were conducted with previvors. Data were analyzed using the constant comparison method of grounded theory. Results: Analysis revealed a theoretical model of previvors' information needs related to the stage of their health journey. Specifically, a four-stage model was developed based on the data: (1) pre-testing information needs, (2) post-testing information needs, (3) pre-management information needs, and (4) post-management information needs. Two recurring dimensions of desired knowledge also emerged within the stages—personal/social knowledge and medical knowledge. Conclusions: While previvors may be genetically predisposed to develop cancer, they have not been diagnosed with cancer, and therefore have different information needs than cancer patients and cancer survivors. Practice Implications: This model can serve as a framework for assisting healthcare providers in meeting the specific information needs of cancer previvors.