Mary Jane Esplen

Multidisciplinary weight management in locoregional breast cancer: results of a phase II study.

Sixty-one women with newly diagnosed locoregional breast cancer (T 1–3, N0-1, M0) having an initial Body Mass Index (BMI) between 20 and 35 kg/m2 who were receiving standard adjuvant treatment (chemotherapy, tamoxifen, and/or radiation) were asked to avoid weight gain (if initial BMI ≤ 25 kg/m2) or to lose up to 10 kg (if initial BMI 25–35 kg/m2) over one year. Women participated in twenty group sessions (10 weekly, 10 monthly) which involved a psychological supportive-expressive group intervention supplemented by individual weight goals, and nutrition and exercise programs. Fifty-five non-censored women (5 developed recurrence, 1 died of a subarachnoid hemorrhage) lost a mean of 0.53 ± 3.72 kg. Weight loss was greatest in initially overweight women (BMI ≥ 25 kg/m2) who lost 1.63 ± 4.11 kg (p = 0.01 compared to normal weight women) and in those not receiving chemotherapy who lost 2.15 ± 2.83 kg (p=0.0004 compared to those receiving chemotherapy). 70.9% met predefined criteria for success. Aerobic exercise increased significantly during the intervention (p = 0.00005) and was the strongest predictor of success (OR 1.73 for each additional 30 minutes of exercise weekly, p=0.003). Changes in caloric intake were not significant, but fat intake decreased and carbohydrate and fibre intake increased significantly during the intervention. Eating behavior and psychological status improved significantly. Thus, this multidisciplinary weight management intervention successfully prevented weight gain in women with newly diagnosed locoregional breast cancer, and helped overweight women lose weight.

A couple-based intervention for patients and caregivers facing end-stage cancer: outcomes of a randomized controlled trial

We evaluated the effect of Emotionally Focused Therapy (EFT) [intervention (INT)], modified for the advanced cancer population versus standard care [control (CTL)], on marital functioning and psychosocial outcomes among distressed couples. EFT examines the ways couples process patterns of interaction, facilitating change.

A couples intervention for patients facing advanced cancer and their spouse caregivers: outcomes of a pilot study

Objective: The primary objective of this study was to evaluate the effectiveness of a couples intervention in improving marital functioning in advanced cancer patients and their spouse caregivers. A secondary objective was to determine its impact on other symptoms of psychosocial distress and its feasibility and acceptability as a clinical intervention.

Colorectal cancer survivors undergoing genetic testing for hereditary non-polyposis colorectal cancer: motivational factors and psychosocial functioning.

Hereditary non‐polyposis colorectal cancer (HNPCC) represents about 1–3% of all cases of colorectal cancer (CRC). The objectives of the study were to examine motivational factors, expectations and psychosocial functioning in a sample of CRC survivors undergoing genetic testing for HNPCC. A cross‐sectional survey of 314 colorectal cancer patients recruited through a population‐based colon cancer family registry was conducted. Motivations for genetic testing for hereditary cancer were similar to those of clinic‐based samples of CRC patients and included learning of the increased risk to offspring and finding out if additional screening was needed. While age at diagnosis and sex were associated with psychological functioning, significant predictors of post‐counseling distress were perceived lower satisfaction with social support, an escape‐avoidant coping style and the anticipation of becoming depressed if a mutation was present. Most cancer survivors anticipated disclosing test results to relatives and physicians. Cancer survivors reported several motivations for genetic testing for HNPCC that varied by sex. A subgroup of survivors with lower satisfaction with social support and an escape‐avoidant coping style were worried about the potential impact of genetic test results and demonstrated more distress following counseling. Findings have implications for future research and potential support needs during the genetic counseling and testing process.

The BRCA Self-Concept Scale: a new instrument to measure self-concept in BRCA1/2 mutation carriers.

Genetic testing for BRCA1/2 has psychosocial impacts including those related to views of personal health, sense of self and identity and body image. The centrality of a persons self‐concept in maintaining physical and psychosocial well‐being has been well recognized; however, to date research exploring altered self‐concept related to carrier knowledge is limited.

A multicenter study of supportive-expressive group therapy for women with BRCA1/BRCA2 mutations

Women with a BRCA1/BRCA2 mutation experience significant challenges. These include decision‐making regarding surgical options and notification to offspring and family, along with a sense of isolation, which may lead to psychological and emotional distress. The current study developed, standardized, and conducted preliminary testing of a supportive‐expressive group therapy intervention designed to address these challenges.

An investigation of the disclosure process and support needs of BRCA1 and BRCA2 carriers

Disclosure of the results of a positive genetic mutation to offspring can be challenging. The purpose of this study was to investigate the content and process of disclosure from BRCA1/2 carriers to their offspring. A semi‐structured questionnaire focused on the disclosure processes between parent and offspring. Thirty‐one/40 mothers with BRCA1/2 mutations completed the cross‐sectional survey. Sixteen carriers (51.6%) chose to disclose their results to all of their children, thirteen carriers (41.9%) chose not to disclose their results, and two carriers (6.5%) chose to disclose to some of their children. The age of a child appeared to be the most significant contributing factor in the decision to disclose. The mean age of the offspring who learned of the positive test result was 24.3 years with most carriers advocating the ideal age range for disclosure from 19 to 25 years. There was a discrepancy between actual and potential disclosure topics between those who had disclosed and those who had not disclosed at the time of the survey. Women who disclosed their result tended to do so alone, within a week of learning their own results, equally to male and female offspring and expressed that the relationships between themselves and their children had strengthened since revealing the presence of a genetic mutation in the family. Women who had not disclosed the results of their genetic test to offspring were significantly more interested in receiving additional individual counseling, educational videos, and email newsletters that focus on disclosure of this complex and life altering information compared to those who had already disclosed. Disclosure of BRCA1/2 results is determined primarily by age of offspring, is usually done by women alone, relatively soon after receiving results and appears to enhance the relationships between mothers and offspring. Both disclosed and non‐disclosed carriers demonstrated significant interest in a variety of interventions to support the disclosure process.

The educational needs and professional roles of Canadian physicians and nurses regarding genetic testing and adult onset hereditary disease.

Objective: To investigate the knowledge, professional involvement and confidence of Canadian nurses and physicians in providing genetic services for adult onset hereditary disease. Methods: 1,425 physicians and 1,425 nurses received a mailed questionnaire with reminders. The response rates were 50% (n = 543) and 79% (n = 975), respectively. Results: Forty-eight percent of physicians and 31% of nurses lacked formal education in genetics. Respondents reported being involved in caring for people at risk for adult onset hereditary disease. Their levels of confidence that they could perform tasks, such as counselling about predictive genetic tests, however, were lower than their levels of expectation that it would be important for them to provide these services. Conclusions: The expected roles and educational needs of Canadian nurses and physicians have broad areas of overlap suggesting the possibility of combined professional education programs and multiple ways of organizing teams to provide genetic services to people at risk for adult onset hereditary disease.

The impact of prophylactic salpingo‐oophorectomy on quality of life and psychological distress in women with a BRCA mutation

The objective of this study was to measure the impact of prophylactic salpingo‐oophorectomy on health‐related quality of life and psychological distress in women.

International Perspectives on Genetic Counseling and Testing for Breast Cancer Risk

Familial cancer services have been developed in many countries in response to a rapidly evolving demand for genetic counseling and testing for breast cancer risk. This article presents a synthesis of the literature on international aspects of genetic counseling and testing and discusses similarities and differences in the provision of genetic counseling and testing, taking seven countries with well established familial cancer services as a case study (Australia, Canada, France, Germany, Netherlands, UK and US). Potential international differences are discussed in terms of: provider and patient attitudes to genetic counseling and genetic testing; utilization rates of genetic testing and prophylactic surgery; and the psychological impact of genetic testing for breast cancer risk. The comparative analyses of utilization rates and the psychological impact of testing indicate a wide range of variability in uptake rates and psychological outcomes, most likely reflecting sample variability and methodological differences in measurement. International comparison studies using controlled designs would be required to ascertain whether international differences exist, and to disentangle the differential role of clinical, individual and family context factors, on the one hand, and the cultural and health system-related factors unique to particular countries, on the other.