“When Information is Not Enough”: A Model for Understanding BRCA-Positive Previvors’ Information Needs Regarding Hereditary Breast and Ovarian Cancer Risk

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BRCA, decision-making, hereditary breast and ovarian cancer, information, genetics, previvors, uncertainty

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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.

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Citation / Publisher Attribution

Patient Education and Counseling, v. 100, issue 9, p. 1738-1743