Kaaren Watts

When the Risks Are High Psychological Adjustment Among Melanoma Survivors at High Risk of Developing New Primary Disease

In this study we explored the psychosocial experiences of melanoma survivors at high risk of developing new primary disease. A total of 20 survivors (9 men, 11 women, mean age 57.6 years) completed a semistructured telephone interview, exploring melanoma-related beliefs and experiences, psychological adjustment to melanoma risk, and supportive care needs. Participants perceived melanoma as potentially terminal and reported persistent worries about the possibility of developing new or metastatic disease. Fear of developing a new melanoma endured for years after treatment completion and, for some, created a pervasive sense of uncertainty. Still, not a single participant sought formal emotional support to address his or her melanoma-related concerns. Belief in the benefits of early intervention, including self- and clinical skin examination, provided a sense of control and a recommended course of action in an otherwise uncontrollable situation. The expertise of the High Risk Clinic physicians was perceived as instrumental in creating a sense of reassurance.

The testing effect, collaborative learning, and retrieval-induced facilitation in a classroom setting

Two studies were conducted to investigate aspects of the test effect in a tertiary education setting. During weekly tutorial sessions first year psychology students watched a psychobiology video (Phase 1), followed by different video-related activities (Phase 2). In the tutorial 1 week later, students took an unexpected test (Phase 3). In Phase 2 of Study 1, students completed a quiz in small groups (group quiz) or individually (individual quiz), highlighted the video transcript (re-study), or did nothing further (no-activity). Group quiz performance was superior to individual quiz in both Phase 2 and Phase 3. In Phase 3 individual quiz students performed better than no-activity students, but not better than restudy students. In exploring the individual testing effect further, Phase 2 of Study 2 included quiz (individual), restudy, and no-activity conditions. Quiz participants were presented with one (target) of two sets of questions, whereas restudy participants were presented with equivalent statements. During Phase 3, all participants answered both sets of questions (target and related). Quiz performance was superior to restudy and no-activity performance on both target and related material, supporting the retrieval-induced facilitation explanation of the testing effect. Implications of the current research for assessment practices in classroom settings are discussed, and directions for future research are indicated.

Getting to the Point: What Women Newly Diagnosed With Breast Cancer Want to Know About Treatment-Focused Genetic Testing

PURPOSE/OBJECTIVES To identify young womens information preferences regarding treatment-focused genetic testing (TFGT) and to develop and evaluate a novel educational resource. RESEARCH APPROACH Qualitative interview study and pilot testing of a novel resource. SETTING Two familial cancer services and one outpatient oncology clinic in Sydney and Melbourne, Australia. PARTICIPANTS 26 women with breast cancer aged 50 years and younger who either previously had TFGT (n = 14) or had a diagnosis of breast cancer within the previous 6-12 months. METHODOLOGIC APPROACH Participants were asked about their views of TFGT in semistructured interviews. A brief pamphlet on TFGT then was developed and pilot tested with 17 of the 26 women. MAIN RESEARCH VARIABLES Womens attitudes and preferences with regard to timing, mode of delivery, and amount and format of information regarding TFGT were explored. FINDINGS Most women wanted to be informed about TFGT at or around the time of their cancer diagnosis via a face-to-face consultation. No clear preference existed for which type of healthcare professional should provide information on TFGT. Brief written information about TFGT was viewed as important supporting material. The educational resource developed was well received. CONCLUSIONS The potential for more widespread TFGT in the future indicates a need for patient educational materials that enable women to make informed choices about TFGT. This pilot study has provided timely initial evidence on the efficacy of a brief written resource in preparing women for decision making about TFGT. INTERPRETATION The resource developed in this study will assist oncology nurses to make important genetic risk information available to women newly diagnosed with breast cancer at a stressful time.

How should we discuss genetic testing with women newly diagnosed with breast cancer? Design and implementation of a randomized controlled trial of two models of delivering education about treatment-focused genetic testing to younger women newly diagnosed with breast cancer

BackgroundGermline BRCA1 and BRCA2 mutation testing offered shortly after a breast cancer diagnosis to inform women’s treatment choices - treatment-focused genetic testing ‘TFGT’ - has entered clinical practice in specialist centers and is likely to be soon commonplace in acute breast cancer management, especially for younger women. Yet the optimal way to deliver information about TFGT to younger women newly diagnosed with breast cancer is not known, particularly for those who were not suspected of having a hereditary breast cancer syndrome prior to their cancer diagnosis. Also, little is known about the behavioral and psychosocial impact or cost effectiveness of educating patients about TFGT. This trial aims to examine the impact and efficiency of two models of educating younger women newly diagnosed with breast cancer about genetic testing in order to provide evidence for a safe and effective future clinical pathway for this service.Design/methodsIn this non-inferiority randomized controlled trial, 140 women newly diagnosed with breast cancer (aged less than 50 years) are being recruited from nine cancer centers in Australia. Eligible women with either a significant family history of breast and/or ovarian cancer or with other high risk features suggestive of a mutation detection rate of > 10% are invited by their surgeon prior to mastectomy or radiotherapy. After completing the first questionnaire, participants are randomized to receive either: (a) an educational pamphlet about genetic testing (intervention) or (b) a genetic counseling appointment at a family cancer center (standard care). Each participant is offered genetic testing for germline BRCA mutations. Decision-related and psychosocial outcomes are assessed over 12 months and include decisional conflict (primary outcome);uptake of bilateral mastectomy and/or risk-reducing salpingo-oophorectomy; cancer-specific- and general distress; family involvement in decision making; and decision regret. A process-oriented retrospective online survey will examine health professionals’ attitudes toward TFGT; a health economic analysis will determine the cost effectiveness of the intervention.DiscussionThis trial will provide crucial information about the impact, efficiency and cost effectiveness of an educational pamphlet designed to inform younger women newly diagnosed with breast cancer about genetic testing. Issues regarding implementation of the trial are discussed.Trial registrationThe study is registered with the Australian and New Zealand Clinical Trials Group (Registration no: ACTRN12610000502033)

Moving toward personalized medicine: treatment-focused genetic testing of women newly diagnosed with ovarian cancer.

Objectives: The presence of a germline BRCA mutation defines a genotype-specific group of women whose invasive ovarian cancer is associated with an increasingly well-defined prognostic and chemosensitivity biological profile. To determine the criteria that may be used to select patients for BRCA treatment-focused genetic testing, we performed a systemic literature search of studies that assessed BRCA1 and BRCA2 mutation frequency in women with ovarian cancer unselected for family history. The results are discussed with regard to the added clinical value gained by identifying a germline BRCA mutation at the time of the ovarian cancer diagnosis. Methods: BRCA-related studies were identified in the CD-ROM databases PubMed (including MEDLINE), PsychINFO, and CINAHL and included in the review if they met the following criteria: they (a) assessed mutation frequency in women with ovarian cancer who were unselected for family history and ethnicity, (b) were published in a peer-review journal, (c) between January 1997 and October 2009, and (d) in the English language. Results: Studies investigating the prevalence of BRCA1 or BRCA2 mutations in ovarian cancer patients unselected for family history or ethnicity have found a pathological BRCA mutation rate of approximately 3% to 17%. Without a significant family history, specific features that may be used to target treatment-focused BRCA testing in the ovarian cancer setting include young age at onset (<50 years), high-grade serous tumor histology, and specific ethnicity associated with known BRCA founder mutations. Conclusions: We believe that given the growing appreciation of the prognostic significance of BRCA mutations and the differential chemosensitivity shown by these tumors, as well as the potential of novel agents such as poly(ADP-ribose) polymerase inhibitors, the identification of a germline BRCA mutation concurrent with a new diagnosis of ovarian cancer will significantly impact on tailoring personalized ovarian management in the future.

Development and pilot testing of an online screening decision aid for men with a family history of prostate cancer.

OBJECTIVE This study aimed to develop and pilot test an online screening decision aid (DA) for men with a family history of prostate cancer. METHODS Eligible men (with no previous prostate cancer diagnosis) were recruited through relatives attending a urology outpatient clinic. Men evaluated the DA in two stages. First, they appraised a paper-based version using a questionnaire (n=22). Second, the same men were asked to reflect on an interactive web-based version via a semi-structured telephone interview (n=20). RESULTS Men evaluated both forms of the DA positively. Of the paper-based version, the majority of participants found the DA useful (91%), and that it contained enough information to make a screening decision (73%). All participants reported that the online DA was easy to use and navigate. Most participants reported that a website was their preferred mode of receiving prostate cancer screening information (70%). CONCLUSION The developed DA may represent the first online decision-making tool designed specifically for men with a family history prostate cancer that presents age and risk specific information to the user. PRACTICE IMPLICATIONS Comprehensive evaluations of the efficacy and impact of educational interventions such as this are crucial to improve services for individuals making informed screening decisions.

Online Prostate Cancer Screening Decision Aid for At-Risk Men: A Randomized Trial

OBJECTIVE This study examines the efficacy of an online screening decision aid (DA) for men with a family history of prostate cancer. METHODS Unaffected Australian men (40-79 years) with at least one affected relative completed the first online questionnaire, were randomized to read either the tailored DA (intervention) or nontailored information about prostate cancer screening (control), then completed a questionnaire postreading and 12 months later. The primary outcome was decisional conflict regarding prostate specific antigen (PSA) testing. The impact of the DA on longitudinal outcomes was analyzed by using random intercept mixed effects models. Logistic and linear regressions were used to analyze the impact of the DA on screening behavior and decision regret. Stage of decision-making was tested as a moderator for decisional conflict and decision regret. The frequency of online material access was recorded. RESULTS The DA had no effect on decisional conflict, knowledge, inclination toward PSA testing, accuracy of perceived risk, or screening behavior. However, among men considering PSA testing, those who read the DA had lower decision regret compared with men who read the control materials, β = 0.34, p < .001, 95% confidence interval (CI) = [.22, .53]. CONCLUSIONS This is the first study to our knowledge to evaluate the uptake and efficacy of an online screening DA among men with a family history of prostate cancer. Men who were undecided about screening at baseline benefitted from the DA, experiencing less regret 12 months later. In relation to decisional conflict, the control materials may have operated as a less complex and equally informative DA.

Communication and Information Needs of Women Diagnosed With Ovarian Cancer Regarding Treatment-Focused Genetic Testing

PURPOSE/OBJECTIVES To identify womens information and communication preferences about treatment-focused genetic testing (TFGT) in the ovarian cancer context. RESEARCH APPROACH A qualitative interview study. SETTING Two familial cancer services and a gynecologic oncology clinic at a major teaching hospital in Australia. PARTICIPANTS 22 women diagnosed with ovarian cancer who had either advanced disease and had previously undergone TFGT (n = 12) or had been diagnosed in the previous 6-20 weeks with ovarian cancer and had not undergone TFGT (n = 10). METHODOLOGIC APPROACH Participants were interviewed individually about actual and hypothetical views of TFGT. The interviews were transcribed and organized into themes using qualitative analysis software. FINDINGS Most women wanted to be informed about TFGT prior to their surgery for ovarian cancer. The majority preferred to receive the information verbally; slightly more women preferred their medical oncologist to deliver the information compared to a genetic specialist or oncology nurse. Women preferred the focus of pretest information to be on them and their treatment. CONCLUSIONS Women diagnosed with ovarian cancer want information about genetic testing early with focus placed on the potential benefits of genetic testing on treatment. INTERPRETATION The findings of this study provide much-needed guidance to oncology nurses and other oncology healthcare professionals about when, what, and how information about TFGT should be delivered to patients diagnosed with ovarian cancer. Supportive patient education materials now need to be developed to assist these women in making informed decisions about genetic testing. KNOWLEDGE TRANSLATION Knowing that women do want TFGT, how they want it presented and by whom, and the content and level of detail that women want means that TFGT can now be presented as an option to women newly diagnosed with ovarian cancer, which may influence firstline treatment. The findings also provide the knowledge required to prepare education tools to assist oncology nurses involved in frontline care.

Streamlined genetic education is effective in preparing women newly diagnosed with breast cancer for decision making about treatment-focused genetic testing: a randomized controlled noninferiority trial

Purpose:Increasingly, women newly diagnosed with breast cancer are being offered treatment-focused genetic testing (TFGT). As the demand for TFGT increases, streamlined methods of genetic education are needed.Methods:In this noninferiority trial, women aged <50 years with either a strong family history (FH+) or other features suggestive of a germ-line mutation (FH−) were randomized before definitive breast cancer surgery to receive TFGT education either as brief written materials (intervention group (IG)) or during a genetic counseling session at a familial cancer clinic (usual-care group (UCG)). Women completed self-report questionnaires at four time points over 12 months.Results:A total of 135 women were included in the analysis, all of whom opted for TFGT. Decisional conflict about TFGT choice (primary outcome) was not inferior in the IG compared with the UCG (noninferiority margin of −10; mean difference = 2.45; 95% confidence interval −2.87–7.76; P = 0.36). Costs per woman counseled in the IG were significantly lower (AUD

Predictors of relationship adjustment among couples coping with a high risk of developing breast/ovarian cancer

89) compared with the UCG (AUD