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

https://doi.org/10.1016/j.pec.2017.03.013Get rights and content

Highlights

  • Previvors are patients genetically predisposed to develop hereditary cancer.

  • We conducted interviews with 25 previvors regarding their information needs.

  • A four-stage model was created based on the interview data.

  • The model may assist previvors and healthcare providers in managing genetic 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.

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 previvorsinformation 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.

References (38)

  • S. Friedman et al.

    Confronting Hereditary Breast and Ovarian Cancer: Identify Your Risk, Understand Your Options, Change Your Destiny

    (2012)
  • M.P. Lux et al.

    Hereditary breast and ovarian cancer: review and future perspectives

    J. Mol. Med.

    (2006)
  • M. Carey et al.

    The unfulfilled promise: a systematic review of interventions to reduce the unmet supportive care needs of cancer patients

    Support Care Cancer

    (2012)
  • T.H.M. Keegan et al.

    Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study

    J. Cancer Surviv.

    (2012)
  • G.M. Leydon

    Cancer patients’ information needs and information seeking behaviour: in depth interview study

    Brit Med J

    (2000)
  • L.S. Donnelly et al.

    Reproductive decision-making in young female carriers of a BRCA mutation

    Hum. Reprod.

    (2013)
  • J. DiMillo et al.

    Living with the BRCA genetic mutation: an uncertain conclusion to an unending process

    Psychol. Health Med.

    (2013)
  • M. Dean et al.

    Managing uncertainty in clinical encounters

  • M. Politi et al.

    Patient-centered communication during collaborative decision making

  • Cited by (33)

    • Perceptions and care Recommendations from Previvors: Qualitative analysis of female BRCA1/2 mutation Carriers’ experience with genetic testing and counseling

      2022, Gynecologic Oncology Reports
      Citation Excerpt :

      A paucity of research has found that genetic mutations alter the dynamic of family systems and relationships. As outlined in past qualitative research, the nature of BRCA1/2 genetic mutations often suggests an impending cancer diagnosis at some point in one’s life (Dean, 2016; Hesse-Biber, 2018), which in turn can negatively impact solidarity of family relationships and communicative patterns (Dean et al., 2017; Dean and Rauscher, 2018). While genetic testing/counseling is growing in popularity and accessibility, past literature has overlooked the impact, both negative and positive, that genetic testing/counseling may have on women at risk for these mutations.

    • Examining information-seeking behavior in genetic testing for cancer predisposition: A qualitative interview study

      2021, Patient Education and Counseling
      Citation Excerpt :

      For most of our participants, genetic counseling was the entry point for information-seeking, but participants did not perceive this as problematic retrospectively. Genetic counseling thus not only provides factual information, as elucidated in previous work [12], but is also used by counselees to elucidate and confirm existing beliefs and values. In line with this finding, some counselees already come with firm attitudes to genetic counseling, which might influence their decision-making process more than factual knowledge obtained in genetic counseling [18,29].

    • Precision prophylaxis: Identifying the optimal timing for risk-reducing salpingo-oophorectomy based on type of BRCA1 and BRCA2 cluster region mutations

      2020, Gynecologic Oncology
      Citation Excerpt :

      Providing patients with as much information as possible may help patients make decisions and can help give them a greater sense of control [31–34]. Women who carry BRCA1/2 have unique information needs [35]. A common challenge for these women is the need to navigate both surgical decision-making and family planning [36].

    • Enhancing livestock vaccination decision-making through rapid diagnostic testing

      2019, World Development Perspectives
      Citation Excerpt :

      Despite these efforts, households underinvest in livestock vaccines. This is due in part to the provision of veterinary goods and services of variable quality and reliability in Africa (Ilukor, 2017), coupled with the unpredictability of adverse health events (Dean et al., 2017), and household responsibilities to invest in competing needs across humans and animals, with direct correlates to human food supply taking precedence (Quinn, Huby, Kiwasila, & Lovett, 2003; Waithanji, Wanyoike, & Liani, 2015). Increasing information provision to allow households to more accurately determine whether vaccination is necessary would encourage them to reconsider the benefits to vaccination, including the indirect advancement of household wellbeing.

    View all citing articles on Scopus
    View full text