“When information is not enough”: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk
Graphical abstract
Introduction
BRCA1 and BRCA2 carriers are at significantly increased risk to develop breast and ovarian cancer; depending on age, BRCA1 carriers have a 40–87% chance of developing breast cancer and a 22–65% chance for ovarian cancer, while BRCA2 carriers have an 18–87% chance of developing breast cancer and a 10–35% chance for ovarian cancer [1]. Since the identification of the BRCA1 and BRCA2 genes, hereditary breast and ovarian cancer (HBOC) researchers have argued for increased attention toward patients’ information needs regarding their diagnoses and risk management strategies [2], [3], [4], [5], [6], [7]. While existing research has explored cancer patients and survivors’ information needs and decision-making preferences generally [10], [11], [12], [13], the information needs of BRCA-positive, unaffected patients are likely to be distinct from cancer patients and survivors. BRCA-positive, unaffected patients are often referred to as previvors. According to FORCE, the organization that coined the term, previvors are individuals who are survivors of a predisposition to HBOC but have not been diagnosed. Previvors can be individuals who carry a BRCA mutation or who have a significant family history of HBOC (www.facingourrisk.org).1
Previvors have unique psychosocial and health-related concerns and needs in order to effectively manage their HBOC risk [14]. For example, previous research indicates after testing positive for BRCA previvors experience uncertainty, which cannot be completely eliminated because the risk for developing cancer is always present [15], [16]. Uncertainty produces detrimental effects on patients’ health such as emotional distress, poor decision-making, and lower quality of life [17], [18]. One effective strategy for managing uncertainty is information [19], [20], [21]. Information assists patients in understanding their situations, increases their knowledge, heightens their sense of control, and enables them to make informed health decisions [19], [22], [23].
What little research investigating BRCA-positive, unaffected patients’ health experiences focuses on genetic counseling and testing and medical decision-making. This body of research has found previvors undergo genetic testing when there is a significant family history of HBOC [24], [25] and then must make complex preventative health and family decisions [25], [26], [27]. However, to the best of our knowledge, no studies have examined previvors’ specific information concerns and needs as a strategy for managing uncertainty. This gap in the research is problematic because the management of uncertainty is essential to make informed health decisions. Therefore, the purpose of this study was to identify previvors’ information needs in order to inform the development of an educational intervention to manage uncertainty and promote uptake of appropriate prevention activities.
This study was framed by the Theory of Motivated Information Management (TMIM). According to the TMIM [28], individuals actively seek and manage information about health threats through information providers (i.e., healthcare provider, romantic partner, family member, or friend) in order to reduce undesirable emotions caused by uncertainty (i.e., anxiety, fear, worry). Because the first step in understanding how seeking and managing information may assist previvors in coping with their cancer-related uncertainty, the following research question guided this study: What are previvors’ information needs?
Section snippets
Recruitment and data collection
Following IRB approval, a purposive sampling strategy was utilized, recruiting previvors via social media (i.e., Facebook and Twitter) [29]. Interested participants emailed the third author to schedule an interview. Eligible participants were: (1) BRCA-positive, (2) not diagnosed with cancer during their lifetime, (3) female, (4) over 18-years old, and (5) English speaking.
Telephone, semi-structured interviews were conducted between October and December of 2015. Semi-structured interviews
Participants characteristics
The purpose of this study was to investigate previvors’ information needs after testing positive for a deleterious BRCA genetic mutation. A total of 25 participants completed an interview (Table 1). The majority was age 40 and younger (n = 15; 60%), white (n = 24; 96%), non-Hispanic (n = 23; 92%), not of Ashkenazi Jewish Heritage (n = 17; 68%), married (n = 17; 68%) and most had a graduate degree (n = 11; 44%). With regard to clinical characteristics, the majority was tested 3 or more years prior (n = 15;
Discussion
This study investigated previvors’ information needs after testing positive for a BRCA genetic mutation. Analysis revealed a theoretical model for understanding of previvors’ information needs across their health care journey. Specifically, four stages of information needs were identified with two recurring dimensions across those stages. The first stage, pre-testing information, referred to the medical knowledge of previvors’ healthcare providers and office staff and personal/social knowledge
Declaration
I confirm all patient/personal identifiers have been removed or disguised so the patient/person(s) described are not identifiable and cannot be identified through the details of the story.
Conflict of interest statement
The authors report no conflicts of interest.
Acknowledgments
This research was supported by an internal “New Researcher Grant” from the University of South Florida. The authors would like to thank FORCE for allowing them to recruit participants as well as thank their participants for sharing their personal health experiences.
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