A randomised controlled trial of a psychoeducational intervention for women at increased risk of breast cancer

Abstract

This study aimed to compare the impact of two versions of a psychoeducational written intervention on cancer worry and objective knowledge of breast cancer risk-related topics in women who had been living with an increased risk of familial breast cancer for several years. Participants were randomised to three conditions: scientific and psychosocial information pack (Group 1), scientific information pack only (Group 2) or standard care control (Group 3). They completed postal questionnaires at baseline (n ¼ 163) and 4 weeks (n ¼ 151). As predicted, there was a significant decrease in cancer worry for Group 1, but not Group 2. Objective knowledge significantly improved for both Group 1 and Group 2 as expected, but not Group 3. However, there was an unpredicted decline in cancer worry for Group 3. This study supports the value of a scientific and psychosocial information pack in providing upto-date information related to familial risk of breast cancer for long-term attendees of a familial breast cancer clinic. Further research is warranted to determine how the information pack could be incorporated into the existing clinical service, thus providing these women with the type of ongoing psychosocial support that many familial breast cancer clinics are currently lacking. British Journal of Cancer (2004) In recent years, growing numbers of women with a family history of breast cancer have sought genetic risk counselling to gain information about their risk of developing the disease. This increase in public awareness of family history as a risk factor for breast cancer results from scientific advances in understanding cancer genetics and growing media attention to breast cancer. Genetic testing for breast cancer susceptibility was initially expected to be widely available and informative for all women identified as being at increased risk due to family history. However, it is apparent that at present genetic testing is not an option for the majority of these women for whom a mutation in a known breast cancer susceptibility gene has not been identified in an affected relative. In the absence of proven methods to prevent or reduce the risk of breast cancer, the clinical management of these women is focused primarily on breast cancer screening.Large numbers of women under the age of 50 years are currently attending familial breast cancer clinics on a regular basis for clinical surveillance. As these women are faced with multiple chronic uncertainties regarding their personal risk of developing breast cancer and the effectiveness of risk management, the potential for adverse psychosocial effects is clear. However, psychosocial support or educational information out with regular breast cancer screening appointments (unless specifically requested) are not routinely provided for long-term attendees of many familial breast cancer clinics, including the South East Scotland familial breast cancer clinic in Edinburgh.There is limited psychosocial research in women who have been living with an increased risk of familial breast can...

Genetic testing for BRCA1: effects of a randomised study of knowledge provision on interest in testing and long term test uptake; implications for the NICE guidelines

“…Various methods of education, including personal counselling, written information and computer programmes have been shown to improve knowledge on breast cancer genetics, but the effect on interest in testing is less clear [17,20,23,26,[28][29][30]. We now present the results of a large randomised study assessing the effects of educational information on interest in BRCA1 genetic testing in women at increased risk of breast cancer and women with breast cancer.…”

Are family-oriented interventions in Portuguese genetics services a remote possibility? Professionals’ views on a multifamily intervention for cancer susceptibility families

“…Kash et al (1995) reported a randomised controlled trial of a 1-year group intervention, describing a reduced perception of risk and an increased adherence to screening behaviours and in knowledge about participants' high-risk status. In a psychoeducational written intervention consisting of an educational and psychosocial pack, Appleton et al (2004) also found postintervention benefits in terms of diminished cancer worry and improved BRCA risk-related information. Karp et al (1999) described a psychoeducational programme reporting prophylactic mastectomy issues in a group of BRCA carriers, and Speice et al (2002) conducted a six-session psychoeducational intervention focusing on family-related themes.…”

“…Psychoeducational written material including information on scientific and psychosocial aspects of familial risk for cancer may also be distributed, as described in the study of Appleton et al (2004).…”

Concerns and recommendations regarding inherited cancer risk: The perspectives of survivors and female relatives

“…18,19 However, only a small percentage of individuals who may benefit from a greater understanding of their risk for cancer actually undergo genetic counseling. Further, much of the research has focused on the individual's perception and understanding of their own risk and how they convert complex information into something understandable that will inform their decisions, 18,20,21 with little attention to family's perceptions and concerns.…”