Louise Heiniger

Distress in unaffected individuals who decline, delay or remain ineligible for genetic testing for hereditary diseases: a systematic review

Reviews on the psychosocial aspects of genetic testing for hereditary diseases typically focus on outcomes for carriers and non‐carriers of genetic mutations. However, the majority of unaffected individuals from high‐risk families do not undergo predictive testing. The aim of this review was to examine studies on psychosocial distress in unaffected individuals who delay, decline or remain ineligible for predictive genetic testing.

Intuition versus cognition: a qualitative exploration of how women understand and manage their increased breast cancer risk

Abstract Risk comprehension in individuals at increased familial risk of cancer is suboptimal and little is known about how risk is understood and managed by at-risk individuals who do not undergo genetic testing. We qualitatively studied these issues in 36 unaffected women from high-risk breast cancer families, including both women who had and had not undergone genetic testing. Data were collected through semi-structured interviews and data analysis was guided by Grounded Theory. Risk comprehension and risk management were largely influenced by the individual’s experience of coming from a high-risk family, with both tested and untested women relying heavily on their intuition. Although women’s cognitive understanding of their risk appeared generally accurate, this objective risk information was considered of secondary value. The findings could be used to guide the development and delivery of information about risk and risk management to genetically tested and untested individuals at increased risk of hereditary cancer.

Facilitators and Challenges in Psychosocial Adaptation to Being at Increased Familial Risk of Breast Cancer

Little is known about the process of psychosocial adaptation to familial risk in tested and untested individuals at increased familial risk of cancer. This paper presents findings from a qualitative study of 36 women participating in the Kathleen Cuningham Consortium for Research into Familial Breast cancer (kConFab) Psychosocial study. Facilitators and challenges in psychosocial adaptation were identified through semi-structured interviews. The women, who were either tested (carriers or non-carriers of breast cancer susceptibility mutations) or untested (ineligible for testing or eligible but delayed or declined testing), described personal, support network and healthcare characteristics that impacted on the adaptation process. Challenges in one domain could be overcome by facilitators in other domains and key differences relating to whether women had undergone testing, or not, were identified. Tested and untested women with an increased familial risk of breast cancer may benefit from support tailored to their mutation testing status in order to enhance adaptation.

e-TC: Development and pilot testing of a web-based intervention to reduce anxiety and depression in survivors of testicular cancer

&NA; e‐TC is an online intervention designed to address common psychosocial concerns of testicular cancer survivors. It aims to reduce anxiety, depression and fear of cancer recurrence by providing evidence‐based information and psychological intervention. This paper details the development and pilot testing of e‐TC. During pilot testing, 25 men (with varying psychological profiles) who had completed treatment for testicular cancer, 6 months to 5 years ago (which had not recurred), used e‐TC over a 10‐week period and provided quantitative and qualitative feedback on the feasibility and acceptability of the programme. Six men also completed a qualitative interview to provide detailed feedback on their experiences using e‐TC. Fourteen men (56%) completed at least 80% of the programme. Participants reported a high level of satisfaction with the programme. Mens limited time was a barrier to programme use and completion, and participants suggested that men with a more recent diagnosis and a higher level of distress may be more likely to engage with the programme. e‐TC appears to be a feasible and acceptable online intervention for survivors of testicular cancer. Findings from this study are currently being used to refine e‐TC and guide the design of a larger efficacy study.

Rehabilitating the sick role: The experiences of high-risk women who undergo risk reducing breast surgery

In recent years, Talcott Parsons’ work has come under renewed scrutiny by sociologists who argue that his concept of the sick role has a role to play in current accounts of health and illness. In this paper we describe the ways in which Australian women who had undergone elective risk-reducing breast surgery (with or without ovarian surgery) spoke about their convalescence. Women presented two contrasting recovery narratives in describing their experiences, with the negative effects of breast surgery either minimised or emphasised. In an effort to explain these differences, we draw upon the Parsonian concept of the sick role and argue that the extent to which women either embraced or rejected the sick role in their accounts was related to the amount of external legitimation they had received from healthcare professionals. We conclude that the concept of the sick role may provide useful insight into womens experiences of risk-management today.

Does stress increase risk of breast cancer? A 15-year prospective study

The possible impact of stress on cancer incidence remains controversial. We prospectively evaluated associations between life event stressors, social support, personality characteristics (optimism, anger control, antiemotionality), and risk of developing primary breast cancer (BCa), in women at increased familial risk of BCa.

Distress in unaffected women at increased risk of familial breast cancer who delay, decline or remain Ineligible for predictive genetic testing

Reviews on the psychosocial aspects of genetic testing for hereditary diseases typically focus on outcomes for carriers and non‐carriers of genetic mutations. However, the majority of unaffected individuals from high‐risk families do not undergo predictive testing. The aim of this review was to examine studies on psychosocial distress in unaffected individuals who delay, decline or remain ineligible for predictive genetic testing.

Psychological correlates of not undergoing genetic testing: a systematic review

Reviews on the psychosocial aspects of genetic testing for hereditary diseases typically focus on outcomes for carriers and non‐carriers of genetic mutations. However, the majority of unaffected individuals from high‐risk families do not undergo predictive testing. The aim of this review was to examine studies on psychosocial distress in unaffected individuals who delay, decline or remain ineligible for predictive genetic testing.

Knowledge is power. Coping with the risk and uncertainty of familial breast cancer

Abstract of a poster presentation presented at the Joint Meeting of the COSA 39th Annual Scientific Meeting and IPOS 14th World Congress of Psycho-Oncology, 13-15 November 2012, Brisbane Convention and Exhibition Centre.

Risk-reducing surgery for breast and ovarian cancer risks - where are we now?

This talk will revisit some familiar issues about risk-reducing breast and ovarian surgery to manage cancer risks. I will focus upon the impact that surgery has on women’s lives and discuss their information needs. My talk will be illustrated with data collected during interviews with 40 Australian women as part of the kConFab Psychosocial study (Butow et al). Two emergent themes – looking different and feeling different - captured the psychosocial impact of surgery upon the interviewees. Many of the women said they felt differently about their bodies following RR surgery. All were relieved at having removed the risk of cancer that had previously been embodied in their breasts and ovaries, however reducing, risk by removing breasts and ovaries is not without costs. Interviewees reported experiencing a range of negative emotions and a series of unexpected bodily sensations following surgery and reflected upon positive and negative changes in their appearance. I will conclude that while women who undergo RR surgery are now informed about some of the sequelae, they are still not adequately prepared for the reality of undergoing this procedure. It will be suggested that, in addition to cosmetic outcomes, pre-surgical counselling needs to focus upon the experiential or sensational aspects of risk reducing surgery.