Effects of monitoring versus blunting on the public's preferences for information in a hypothetical cancer diagnosis scenario.

Monitoring and blunting are coping styles that characterize how people respond when faced with personally threatening situations. High monitors tend to pay more attention to, scan for, and amplify threatening cues; high blunters tend to avoid information and seek distractions when faced with a threatening event. This study sought to investigate possible differential effects of monitoring and blunting coping styles on information preferences in a hypothetical cancer diagnosis scenario in the adult general public of Minnesota. In a survey administered at a large public venue (2016 Minnesota State Fair), participants were asked to imagine they carried a gene mutation and were diagnosed with colon cancer. They indicated their information preference [modified Cassileth Information Styles Questionnaire (MCISQ)], completed two coping style measures [Miller Behavioral Style Scale (MBSS) and Threatening Medical Situations Inventory (TMSI)], rated their perceived severity of colon cancer (low, moderate, high), and answered demographic questions. Eight hundred fifty-five individuals provided usable data. Participants classified as monitors on the TMSI had significantly higher MCISQ scores (i.e., preferred more information) than those classified as blunters (p = .004). Those scoring high on monitoring and low on blunting on the MBSS preferred significantly more information than those scoring high on both monitoring and blunting (p = .04). Linear regression analysis revealed being a monitor (TMSI), scoring high on monitoring (MBSS), rating colon cancer as more severe, and having a higher education level were significant positive predictors of MCISQ scores. Results suggest individual differences in coping style, perceived severity, and education level affect desire for information. Genetic counselors should consider these patient characteristics (e.g., asking patients about their information preferences) and tailor their approaches accordingly.

Cancer-Related Distress: Revisiting the Utility of the National Comprehensive Cancer Network Distress Thermometer Problem List in Women With Gynecologic Cancers.

PURPOSE: The Distress Thermometer (DT) includes a measure of cancer-related distress and a list of self-reported problems. This study evaluated the utility of the DT problem list in identifying concerns most associated with distress and poorer quality of life (QOL) in survivors of gynecologic cancer. METHODS: Demographic, clinical, psychosocial functioning, and DT data were described among 355 women participating in a gynecologic cancer cohort. Problems from the DT list were ranked by prevalence, distress, and QOL. Logistic regression models explored factors associated with problems that were common (≥ 25% prevalence) and associated with distress and QOL. RESULTS: The average age of participants was 59.9 years (standard deviation [SD], 10.8 years). Most participants were non-Hispanic white (97%) and had ovarian (44%) or uterine (42%) cancer. The mean DT score was 2.7 (SD, 2.7); participants reported a mean of 7.3 problems (SD, 5.9 problems). The most common problems were fatigue (53.6%), worry (49.9%), and tingling (46.3%); least common problems were childcare (2.1%), fevers (2.1%), and substance abuse (1.1%). Report of some common problems, including tingling, sleep, memory, skin issues, and appearance, was not associated with large differences in distress or QOL. In contrast, some rarer problems such as childcare, treatment decisions, eating, housing, nausea, and bathing/dressing were associated with worse distress or QOL. Younger age, lower income, and chemotherapy were risk factors across common problems that were associated with worse distress or QOL (fatigue, nervousness, sadness, fears, and pain). CONCLUSION: The DT problem list did not easily identify concerns most associated with distress and low QOL in patients with gynecologic cancer. Adaptations that enable patients to report their most distressing concerns would enhance clinical utility of this commonly used tool.

A patient-centered mobile health application to motivate use of genetic counseling among women with ovarian cancer: A pilot randomized controlled trial.

OBJECTIVE: Despite current guidelines recommending women with ovarian cancer receive genetic risk evaluation by a genetic counselor, utilization has historically been low. We sought to assess the feasibility and effectiveness of a week-long mobile Application for Genetic Information on Cancer (mAGIC) intervention aimed to persuade women with ovarian cancer to pursue genetic counseling. METHODS: The mobile application intervention was based on the Fogg Behavior Model, and consisted of three parts: (1) identifying barriers, (2) developing motivators, and (3) providing triggers to action. The Health Belief Model was used to guide content development. We conducted a prospective, randomized, controlled pilot trial among 104 untested women with a history of epithelial ovarian, primary peritoneal or fallopian tube cancer with the primary objective of increasing uptake of cancer genetic counseling services. RESULTS: Utilization of cancer genetic counseling services improved in both study arms over historical controls, however there was no statistically significant difference between them (intervention: 54.5% versus control: 38.6%; p = 0.14). However, compared to controls, women randomized to the mAGIC intervention demonstrated greater knowledge of hereditary cancer (0-10 scale; 9.4 ±â€¯1.0 vs. 7.1 ±â€¯1.5; p < 0.0001), which persisted for at least three months. Additionally, 96% of women in the intervention group reported they had talked with their family about genetic counseling compared to 77% in the control group (p = 0.01). CONCLUSIONS: The mAGIC intervention did not result in increased uptake of genetic counseling, however it provided significant secondary benefits, including increased participants' knowledge about hereditary ovarian cancer, self-efficacy, and their reported communication with family members. ClinicalTrials.gov Identifier: NCT02877862.

A qualitative study of barriers to genetic counseling and potential for mobile technology education among women with ovarian cancer.

BACKGROUND: National guidelines recommend genetic counseling for all ovarian cancer patients because up to 20% of ovarian cancers are thought to be due to hereditary cancer syndromes and effective cancer screening and prevention options exist for at-risk family members. Despite these recommendations, uptake of genetic counselling and testing is low. The goal of this study was to identify barriers to and motivators for receipt of genetic counseling along with preferences regarding potential use of a mobile application to promote genetic counseling. METHODS: Three focus groups were conducted including 14 women with a diagnosis of epithelial ovarian, primary peritoneal or fallopian tube cancer. Topics included understanding of genetic counseling, perceived pros and cons, preferences for receiving health information, and familiarity with mobile phone technology. Transcripts were analyzed using standard procedures of qualitative thematic text analysis and descriptive coding techniques. RESULTS: Six major themes regarding barriers to and motivators of genetic counseling and use of mobile technology in promoting genetic counseling emerged: (1) need for information, (2) relevance, (3) emotional concerns, (4) family concerns, (5) practical concerns, and (6) mobile application considerations. CONCLUSIONS: These data reiterate previously reported barriers to genetic counseling as observed in other populations. Participants were supportive of the use of mobile technology for promoting uptake of genetic counseling.

Effects of web-based instruction and patient preferences on patient-reported outcomes and learning for women with advanced ovarian cancer: A randomized controlled trial.

A randomized controlled trial was conducted of a web-based intervention to improve advanced care planning in women with ovarian cancer. A secondary analysis of 35 randomized women focused on changes in distress and knowledge about ovarian cancer through distress monitoring and information tailored to patients' cognitive coping style (monitoring, blunting). Pre-/postresults indicated the Intervention group demonstrated lower distress (p = 0.06); blunting was associated with lower depression (p = 0.04); knowledge in both groups was unchanged. Women in the Intervention vs. Control group reported their family was less likely to be upset by cancer information (p = 0.0004). This intervention reduced distress while incorporating patient preferences.

Designing an Educational Website to Improve Quality of Supportive Oncology Care for Women with Ovarian Cancer: An Expert Usability Review and Analysis.

A broad-based research team developed a Health Insurance Portability and Accountability Act (HIPAA)-compliant educational website for women with ovarian cancer to improve the quality of supportive oncology care. Prior to a randomized clinical trial of the website, initial usability testing was implemented to evaluate the website. The initial review found that 165/247 checklist items had sufficient information to allow for evaluation with the website achieving an overall score of 63%. By category, lowest scores were for the Home Page, Task Orientation, Page Layout & Visual Design, and Help, Feedback & Error Tolerance. Major issues thought to potentially impede actual usage were prioritized in redevelopment and the second usability review, conducted by the same expert, saw an improvement in scores. Incorporating usability concepts from the start of development, fulfilling the positive expectations of end-users and identifying technical and personal factors that optimize use may greatly enhance usage of health websites.

Improving referral for genetic risk assessment in ovarian cancer using an electronic medical record system.

OBJECTIVE: We sought to evaluate an electronic referral form to increase referral for genetic risk assessment of women with newly diagnosed epithelial ovarian cancer. METHODS: A form summarizing referral for genetic counseling for women with ovarian cancer was introduced into the electronic medical record allowing gynecologic oncologists to electronically submit a request for genetic services. Analysis compared patient and provider characteristics for women newly diagnosed with ovarian, fallopian tube, and primary peritoneal cancer referred 1 year before and after introducing the form. All patients were seen in a single fee-for-service university-based cancer center clinic. RESULTS: There were 86 newly diagnosed ovarian cancer patients seen before and 83 seen after the introduction of the electronic referral form. Most lived in the metropolitan area and had stage III to IV disease, serous histology, a documented family history, and a treating oncologist who was less than 10 years from completion of fellowship. Postintervention referral rates increased from 17% to 30% (P = 0.053). Factors best predicting referral were whether the patient was seen after the intervention (P = 0.009), resided in the metropolitan area (P = 0.006), and had been identified as at high hereditary risk (P < 0.0001). Sixty percent of the referred patients participated in counseling. There were no differences in baseline characteristics of the referred patients before and after the intervention. CONCLUSIONS: Referral rates increased with the introduction of an electronic medical record referral form suggesting that streamlining the physician referral process might be effective at increasing referrals for cancer genetic risk assessment.

Development and pilot of an advance care planning website for women with ovarian cancer: a randomized controlled trial.

OBJECTIVE: Few available tools facilitate cancer patients and physicians' discussions of quality of life and end-of-life. Our objective was to develop a web-based tool to promote advance care planning for women with ovarian cancer. METHODS: Women with ovarian cancer, their families, clinicians and researchers met to identify ways to improve cancer care. A prototype website was created to address advance care planning, focusing on advance healthcare directives (AHD) and palliative care consultation. Patients were recruited from a gynecologic oncology clinic for a pilot randomized controlled trial. Primary outcomes included completion of an AHD and palliative care consultation. RESULTS: At study completion, 53 women with ovarian cancer were enrolled and 35 completed the study. The mean age at enrollment was 57.9 ± 9.5 years; most were newly diagnosed or at first recurrence. There were no statistical differences in completion of AHD (p=0.220) or palliative care consultation (p=0.440) between intervention and control groups. However, women in the intervention group showed evidence of moving toward decision making regarding AHD and palliative care and lower decisional conflict. Women assigned to the intervention, compared to control website, were highly satisfied with the amount (p=0.054) and quality (p=0.119) of information and when they accessed the website, used it longer (p=0.049). Overall website use was lower than expected, resulting from several patient-related and design barriers. CONCLUSIONS: A website providing information and decisional support for women with ovarian cancer is feasible. Increasing frequency of website use requires future research.

Genetic risk assessment for women with epithelial ovarian cancer: referral patterns and outcomes in a university gynecologic oncology clinic.

Little is known about genetic service utilization and ovarian cancer. We identified the frequency and outcome of genetic counseling referral, predictors of referral, and referral uptake for ovarian cancer patients. Using pathology reports, we identified all epithelial ovarian cancer patients seen in a university gynecologic oncology clinic (1/04-8/06). Electronic medical records (EMR) were used to document genetic service referral, time from diagnosis-to-referral, point-in-treatment at referral, personal/family cancer history, demographics, and genetic test results. Groups were compared using chi-squared and Fisher's exact test for categorical variables and t-tests for continuous variables. The study population consisted of 376 women with ovarian cancer, 72 (19 %) of who were referred for genetic counseling/testing, primarily during surveillance. Of those referred, 42 (58 %) had personal or family genetic counseling and 34 (47 %) were ultimately tested or identified due to known family mutation. Family history and prior cancer were associated with referral. Family history, living in a larger community, higher-stage disease, and serous histology were associated with undergoing genetic counseling. Risk assessment identified 20 BRCA1/2 (5.3 %) and 1 HNPCC (0.3 %) mutation carriers. Based on recent estimates that 11.7-16.6 % of women with ovarian cancer are BRCA carriers and 2 % are HNPCC carriers, results suggest under-identification of carriers and under-utilization of genetic services by providers and patients. Interventions to increase medical providers' referrals, even in a specialized oncology clinic, are necessary and may include innovations in educating these providers using web-based methods. Ease of referral by the introduction of an electronic cancer genetic referral form represents another new direction that may increase genetic risk assessment for high-risk women with ovarian cancer.

Learning about ovarian cancer at the time of diagnosis: video versus usual care.

OBJECTIVE: Effective patient -clinician communication at diagnosis is important, yet decreased provider time for face-to-face interactions makes traditional paradigms in cancer care difficult. We evaluated the effects of an educational video on patients' distress, cancer knowledge, coping skills and attitudes regarding learning about cancer at the time of ovarian cancer diagnosis. METHODS: An educational video was developed in which oncology professionals, women with ovarian cancer, and their relatives discussed cancer information and experiences. Women admitted for initial diagnostic surgical staging for ovarian cancer were randomized to the educational or placebo video. Before and after the video, patients completed measures of (1) ovarian cancer information, (2) emotional distress, (3) learning attitudes, and (4) coping self-efficacy. Outcomes were analyzed for differences in mean change between intervention and placebo groups using t-tests. RESULTS: Fifty-nine subjects were randomized (30 intervention/29 placebo). The majority were advanced staged, white, insured, high school educated, employed, and rated their disease seriousness as high. Anxiety, general distress and cancer-specific distress were high. Pre-post video: distress and self-efficacy between groups were unchanged, intervention subjects answered more knowledge items correctly (p=0.0004) and developed more negative learning attitudes (p=0.037). Following the educational video, patients who developed more negative attitudes also had increased intrusive thinking (p=0.046), a sign of increased distress. CONCLUSIONS: Video presentation of cancer-related information increases learning under conditions of high distress and disease threat however, it is not without risk for some. Differing information needs may affect women's emotional response under these conditions.