domingo, 16 de abril de 2017

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

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





 2017 Mar 10. pii: S0738-3991(17)30143-X. doi: 10.1016/j.pec.2017.03.013. [Epub ahead of print]

"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

PMID:
 
28385363
 
DOI:
 
10.1016/j.pec.2017.03.013

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