“When information is not enough”: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk

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.