"When information is not enough": A model for understanding BRCA-positive previvors' information needs regarding hereditary breast and ovarian cancer 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.

Keywords: BRCA; Decision-making; Genetics; Hereditary breast and ovarian cancer; Information; Previvors; Uncertainty.