Patients' and providers' perspectives on the decision to undergo non-urgent egg freezing: a needs assessment.

BACKGROUND: Previous research has demonstrated that patients have difficulty with the decision to undergo non-urgent egg freezing (EF). This study aimed to investigate the decisional difficulties and possible decisional support mechanisms for patients considering EF, and for their providers. METHODS: This qualitative study involved a needs assessment via individual interviews. Participants included patients considering EF at one academic fertility clinic and providers from across Canada who counsel patients considering EF. 25 participants were included (13 providers and 12 patients). The interview guide was developed according to the Ottawa Decision Support Framework. Interviews were transcribed, and transcripts analyzed for themes and concepts using NVIVO 12. FINDINGS: Multiple factors contributing to decisional difficulty were identified, including: (1) multiple reproductive options available with differing views from patients/providers regarding their importance; (2) a decision typically made under the pressure of reproductive aging; (3) uncertainty surrounding the technology/inadequate outcome data; (4) the financial burden of EF; (5) inherent uncertainty relating to potential decision regret; and (6) differing perceptions between patients/providers regarding the role providers should play in the decision. Additionally, potential sources of decisional support were identified, including provision of basic information before and/or during initial consultation, followed by an opportunity during or after initial consultation for clarifying information and helping with value judgements. Individualized counselling based on patient values, adequate follow-up, psychosocial counselling, and peer support were also emphasized. CONCLUSIONS: More decisional support for women considering EF is needed. Suggestions include a patient decision aid in conjunction with modified healthcare provider counselling, support and follow up.

Analysis of Time to Treatment and Survival Among Adults Younger Than 50 Years of Age With Colorectal Cancer in Canada.

Importance: Colorectal cancer (CRC) is uncommon in adults younger than 50 years of age, so this population may experience delays to treatment that contribute to advanced stage and poor survival. Objective: To investigate whether there is an association between time from presentation to treatment and survival in younger adults with CRC. Design, Setting, and Participants: This retrospective cohort study used linked population-based data in Ontario, Canada. Participants included patients with CRC aged younger than 50 years who were diagnosed in Ontario between 2007 and 2018. Analysis was performed between December 2019 and December 2022. Exposure: Administrative and billing codes were used to identify the number of days between the date of first presentation and treatment initiation (overall interval). Main Outcomes and Measures: The associations between increasing overall interval, overall survival (OS), and cause-specific survival (CSS) were explored with restricted cubic spline regression. Multivariable Cox proportional hazards models were also fit for OS and CSS, adjusted for confounders. Analyses were repeated in a subset of patients with lower urgency, defined as those who did not present emergently, did not have metastatic disease, did not have cross-sectional imaging or endoscopy within 14 days of first presentation, and had an overall interval of at least 28 days duration. Results: Among 5026 patients included, the median (IQR) age was 44.0 years (40.0-47.0 years); 2412 (48.0%) were female; 1266 (25.2%) had metastatic disease and 1570 (31.2%) had rectal cancer. The lower-urgency subset consisted of 2548 patients. The median (IQR) overall interval was 108 days (55-214 days) (15.4 weeks [7.9-30.6 weeks]). Patients with metastatic CRC had shorter median (IQR) overall intervals (83 days [39-183 days]) compared with those with less advanced disease. Five-year overall survival was 69.8% (95% CI, 68.4%-71.1%). Spline regression showed younger patients with shorter overall intervals (<108 days) had worse OS and CSS with no significant adverse outcomes of longer overall intervals. In adjusted Cox models, overall intervals longer than 18 weeks were not associated with significantly worse OS or CSS compared with those waiting 12 to 18 weeks (OS: HR, 0.83 [95% CI, 0.67-1.03]; CSS: HR, 0.90 [95% CI, 0.69-1.18]). Results were similar in the subset of lower-urgency patients, and when stratified by stage. Conclusions and relevance: In this cohort study of 5026 patients with CRC aged younger than 50 years of age in Ontario, time from presentation to treatment was not associated with advanced disease or poor survival. These results suggest that targeting postpresentation intervals may not translate to improved outcomes on a population level.

How do members of the public expect to use variants of uncertain significance in their health care? A population-based survey.

PURPOSE: Genomic sequencing can generate complex results, including variants of uncertain significance (VUS). In general, VUS should not inform clinical decision-making. This study aimed to assess the public's expected management of VUS. METHODS: An online, hypothetical survey was conducted among members of the Canadian public preceded by an educational video. Participants were randomized to 1 of 2 arms, VUS or pathogenic variant in a colorectal cancer gene, and asked which types of health services they expected to use for this result. Expected health service use was compared between randomization arms, and associations between participants' sociodemographic characteristics, attitudes, and medical history were explored. RESULTS: Among 1003 respondents (completion rate 60%), more participants expected to use each type of health service for a pathogenic variant than for a VUS. However, a considerable proportion of participants expected to request monitoring (73.4%) and consult health care providers (60.9%) for a VUS. There was evidence to support associations between expectation to use health services for a VUS with family history of genetic disease, family history of cancer, education, and attitudes toward health care and technology. CONCLUSION: Many participants expected to use health services for a VUS in a colorectal cancer predisposition gene, suggesting a potential disconnect between patients' expectations for VUS management and guideline-recommended care.

Patients' and providers' perspectives on non-urgent egg freezing decision-making: a thematic analysis.

BACKGROUND: The decision to undergo non-urgent egg freezing (EF) is complex for patients and providers supporting them. Though prior studies have explored patient perspectives, no study has also included the separate perspectives of providers. METHODS: This qualitative study involved semi-structured individual interviews exploring the decision to undergo EF. Participants included patients considering EF at one academic fertility clinic and providers who counsel patients about EF from across Canada. Data analysis was accomplished using thematic analysis. Data saturation was met after interviewing 13 providers and 12 patients. FINDINGS: Four themes were identified and explored, illuminating ways in which patients and providers navigate decision-making around EF: (1) patients viewed EF as a 'back-up plan' for delaying the decision about whether to have children, while providers were hesitant to present EF in this way given the uncertainty of success; (2) providers viewed ovarian reserve testing as essential while patients believed it unnecessarily complicated the decision; (3) patients and providers cited a need for change in broader societal attitudes regarding EF since social stigma was a significant barrier to decision-making; and (4) commonality and peer support were desired by patients to assist in their decision, although some providers were hesitant to recommend this to patients. CONCLUSIONS: In conclusion, the decision to undergo EF is complex and individual patient values play a significant role. In some areas, there is disconnect between providers and patients in their views on how to navigate EF decision-making, and these should be addressed in discussions between providers and patients to improve shared decision-making.

Comparing Time to Diagnosis and Treatment Between Younger and Older Adults With Colorectal Cancer: A Population-Based Study.

BACKGROUND & AIMS: Younger adults (aged <50 years) with colorectal cancer (CRC) may have prolonged delays to diagnosis and treatment that are associated with adverse outcomes. We compared delay intervals by age for patients with CRC in a large population. METHODS: This was a population-based study of adults diagnosed with CRC in Ontario, Canada, from 2003 to 2018. We measured the time between presentation and diagnosis (diagnostic interval), diagnosis and treatment start (treatment interval), and the time from presentation to treatment (overall interval). We compared interval lengths between adults aged <50 years, 50 to 74 years, and 75 to 89 years using multivariable quantile regression. RESULTS: Included were 90,225 patients with CRC. Of these, 6853 patients (7.6%) were aged <50 years. Younger patients were more likely to be women, present emergently, have stage IV disease, and have rectal cancer compared with middle-aged patients. Factors associated with significantly longer overall intervals included female sex (8.7 days; 95% confidence interval [CI], 6.6-10.9 days) and rectal cancer compared with proximal colon cancer (9.8 days; 95% CI, 7.4-2.2 days). After adjustment, adults aged <50 years had significantly longer diagnostic intervals (4.3 days; 95% CI. 1.3-7.3 days) and significantly shorter treatment intervals (-4.5 days; 95% CI, -5.3 to -3.7 days) compared with middle-aged patients. However, there was no significant difference in the overall interval (-0.6 days; 95% CI, -4.3 to 3.2 days). In stratified models, younger adults with stage IV disease who presented emergently and patients aged >75 years had longer overall intervals. CONCLUSIONS: Younger adults present more often with stage IV CRC but have overall similar times from presentation to treatment as screening-eligible older adults.

Clinical Delays and Comparative Outcomes in Younger and Older Adults with Colorectal Cancer: A Systematic Review.

Outcome disparities between adults <50 with colorectal cancer (CRC) and older adults may be explained by clinical delays. This study synthesized the literature comparing delays and outcomes between younger and older adults with CRC. Databases were searched until December 2021. We included studies published after 1990 reporting delay in adults <50 that made comparisons to older adults. Comparisons were described narratively and stage between age groups was meta-analyzed. 39 studies were included representing 185,710 younger CRC patients and 1,422,062 older patients. Sixteen delay intervals were compared. Fourteen studies (36%) found significantly longer delays among younger adults, and nine (23%) found shorter delays among younger patients. Twelve studies compared time from symptom onset to diagnosis (N younger = 1538). Five showed significantly longer delays for younger adults. Adults <50 years also had higher odds of advanced stage (16 studies, pooled OR for Stage III/IV 1.76, 95% CI 1.52-2.03). Ten studies compared time from diagnosis to treatment (N younger = 171,726) with 4 showing significantly shorter delays for younger adults. All studies showing longer delays for younger adults examined pre-diagnostic intervals. Three studies compared the impact of delay on younger versus older adult. One showed longer delays were associated with advanced stage and worse survival in younger but not older adults. Longer delays among younger adults with CRC occur in pre-diagnostic intervals.

Measurement of clinical delay intervals among younger adults with colorectal cancer using health administrative data: a population-based analysis.

BACKGROUND: Clinical delays may be important contributors to outcomes among younger adults (<50 years) with colorectal cancer (CRC). We aimed to describe delay intervals for younger adults with CRC using health administrative data to understand drivers of delay in this population. METHODS: This was a population-based study of adults <50 diagnosed with CRC in Ontario, Canada from 2003 to 2018. Using administrative code-based algorithms (including billing codes), we identified four time points along the pathway to treatment-first presentation with a CRC-related symptom, first investigation, diagnosis date and treatment start. Intervals between these time points were calculated. Multivariable quantile regression was performed to explore associations between patient and disease factors with the median length of each interval. RESULTS: 6853 patients aged 15-49 were diagnosed with CRC and met the inclusion criteria. Males comprised 52% of the cohort, the median age was 45 years (IQR 40-47), and 25% had stage IV disease. The median time from presentation to treatment start (overall interval) was 109 days (IQR 55-218). Time between presentation and first investigation was short (median 5 days), as was time between diagnosis and treatment start (median 23 days). The greatest component of delay occurred between first investigation and diagnosis (median 78 days). Women, patients with distal tumours, and patients with earlier stage disease had significantly longer overall intervals. CONCLUSIONS: Some younger CRC patients experience prolonged times from presentation to treatment, and time between first investigation to diagnosis was an important contributor. Access to endoscopy may be a target for intervention.

Time to diagnosis and treatment in younger adults with colorectal cancer: A systematic review.

BACKGROUND: The incidence of colorectal cancer is rising in adults <50 years of age. As a primarily unscreened population, they may have clinically important delays to diagnosis and treatment. This study aimed to review the literature on delay intervals in patients <50 years with colorectal cancer (CRC), and explore associations between longer intervals and outcomes. METHODS: MEDLINE, Embase, and LILACS were searched until December 2, 2021. We included studies published after 1990 reporting any delay interval in adults <50 with CRC. Interval measures and associations with stage at presentation or survival were synthesized and described in a narrative fashion. Risk of bias was assessed using the Newcastle-Ottawa Scale, Institute of Health Economics Case Series Quality Appraisal Checklist, and the Aarhus Checklist for cancer delay studies. RESULTS: 55 studies representing 188,530 younger CRC patients were included. Most studies used primary data collection (64%), and 47% reported a single center. Sixteen unique intervals were measured. The most common interval was symptom onset to diagnosis (21 studies; N = 2,107). By sample size, diagnosis to treatment start was the most reported interval (12 studies; N = 170,463). Four studies examined symptoms onset to treatment start (total interval). The shortest was a mean of 99.5 days and the longest was a median of 217 days. There was substantial heterogeneity in the measurement of intervals, and quality of reporting. Higher-quality studies were more likely to use cancer registries, and be population-based. In four studies reporting the relationship between intervals and cancer stage or survival, there were no clear associations between longer intervals and adverse outcomes. DISCUSSION: Adults <50 with CRC may have intervals between symptom onset to treatment start greater than 6 months. Studies reporting intervals among younger patients are limited by inconsistent results and heterogeneous reporting. There is insufficient evidence to determine if longer intervals are associated with advanced stage or worse survival. OTHER: This study's protocol was registered with the Prospective Register of Systematic Reviews (PROSPERO; registration number CRD42020179707).

High Risk Breast Cancer Screening is a Double Edged Sword: A Qualitative Study of Patient Perspectives on the Ontario High Risk Breast Cancer Screening Program.

BACKGROUND: MRI-based breast cancer screening for high-risk women has been associated with false positives. This study explored the benefits and drawbacks of MRI-based screening using in-depth patient interviews. METHODS: This was a qualitative study of interviews with women participating in the High Risk Ontario Breast Screening Program. Women enrolled at two centers who had completed at least one round of screening were invited to participate. Recruitment was suspended when thematic saturation was reached. Semi-structured telephone interviews were conducted and transcribed verbatim. Emergent themes were identified and a coding framework established. RESULTS: 21 women (median age 41 years) participated in telephone interviews. Women had been in the program a median of 4 years (IQR 1-5), and 71% had experienced at least one abnormal screen. Eight participants (38%) had undergone biopsies. Six women (29%) were BRCA mutation carriers. MRIs were described as intimidating, uncomfortable, and claustrophobic. Participants were concerned about long-term exposure to gadolinium contrast. Compared to MRI, mammography alone was viewed as painful, less sensitive, and a "useless…waste of time." MRI provided a "psychological safety net" that outweighed the distress associated with abnormal screens. Many women accepted this trade-off as a "two-edged sword" that was "worth it" and provided a sense of control. Suggestions for improvement included more information regarding the risks of MRI, and access to counselling. CONCLUSIONS: Women participating in MRI-based screening strongly value reassurance from a highly sensitive screening test. This outweighed the distress of abnormal screens. There are areas for improvement around patient communication and psychosocial support.

Long-term survival in elderly women receiving chemotherapy for non-metastatic breast cancer: a population-based analysis.

BACKGROUND: Older women are poorly represented in trials evaluating chemotherapy for breast cancer (BC). This study aimed to describe survival and associated factors among elderly women receiving chemotherapy for non-metastatic BC. METHODS: This was a population-based cohort study including women ≥ 70 years old diagnosed with invasive, non-metastatic BC from 2010 to 2017 in SEER. Among those who received chemotherapy, overall survival (OS) was determined using Kaplan-Meier curves and hazard ratios were reported with 95% confidence intervals (CIs). Adjustment was made for available confounders. Co-morbidity is not available in SEER. BC-specific survival (BCSS) and subdistribution hazard ratios were determined using competing risks analysis. RESULTS: The cohort consisted of 109,239 women aged 70+, of whom 17,961 (16%) received chemotherapy. Chemotherapy patients were younger (median 73.0 years vs. 77.0), had more advanced disease (25% stage III vs. 5.2%), and were more likely to receive mastectomy (50% vs. 33%). Among chemotherapy patients, 5-year OS was 77.8% (95% CI 76.9-78.6%), and for women 80+ was 60.2% (95% CI 57.5-63.1%). More recent diagnoses, no previous history of cancer, and receipt of radiotherapy were all associated with improved BCSS. Conversely, older age, higher tumour grade, advanced stage, and human epidermal growth factors receptor (HER)2 negative tumours were associated with worse BCSS. 56% of deaths were due to BC, and women aged 80+ had worse BCSS compared to those aged 70-79 (adjusted sdHR 1.62, 95% CI 1.43-1.84). CONCLUSIONS: Elderly women with advanced disease can achieve good survival after chemotherapy for non-metastatic BC. Those with HER2+ disease have superior survival, reinforcing benefit in this population.

Patient opinions on contralateral prophylactic mastectomy: A patient-driven discussion in need of tuning?

BACKGROUND: Rates of contralateral prophylactic mastectomy (CPM) are increasing among women with unilateral breast cancer despite low rates of contralateral recurrence and lack of survival benefit. We aimed to investigate the decisional needs and supports required to ensure adequate and quality decision-making by patients with breast cancer facing the decision regarding CPM. METHODS: In this qualitative study, we used semistructured interviews developed with the use of the Ottawa Decision Support Framework to investigate the decisional needs and supports of women (aged > 18 yr) with nonhereditary breast cancer who had previously discussed CPM with their care provider. Patients were recruited from 2 academic cancer centres in Toronto, Ontario. Interviews were conducted between June 2016 and October 2017. We analyzed responses to the open-ended questions iteratively and inductively to establish major themes within the results. RESULTS: Ten patients were recruited. Eight patients reported having initiated the discussion about CPM. Although most patients reported feeling supported, 6 mentioned some degree of decisional conflict. Cancer risk reduction was the most commonly reported perceived benefit of CPM (9 patients), followed by improved psychologic well-being (7). Most patients (8) did not mention the lack of survival benefit of CPM as a disadvantage of the procedure. Patients indicated that information resources (in 8 cases) and improved counselling from their health care team (in 7) would assist in decision-making. CONCLUSION: Our findings illustrate the disconnect between true and perceived risks (i.e., surgical risk) and benefits (potential recurrence and survival benefit) of CPM, which is not being managed adequately despite support from the health care team. A decision aid may address unmet patient need by providing a reliable resource regarding the benefits and risks of this procedure, while helping patients understand their values and realign their expectations.

Genetics Adviser: a protocol for a mixed-methods randomised controlled trial evaluating a digital platform for genetics service delivery.

INTRODUCTION: The high demand for genetic tests and limited supply of genetics professionals has created a need for alternative service delivery models. Digital tools are increasingly being used to support multiple points in the genetic testing journey; however, none are transferable across multiple clinical specialties and settings nor do they encompass the entire trajectory of the journey. We aim to evaluate the effectiveness of the Genetics Adviser, an interactive, patient-facing, online digital health tool that delivers pre-test counselling, provides support during the waiting period for results, and returns results with post-test counselling, encompassing the entire patient genetic testing journey. METHODS AND ANALYSIS: We will compare the Genetics Adviser paired with a brief genetic counselling session to genetic counselling alone in a randomised controlled trial. One hundred and forty patients who previously received uninformative genetic test results for their personal and family history of cancer will be recruited from familial cancer clinics in Toronto and offered all clinically significant results from genomic sequencing. Participants randomised into the intervention arm will use the Genetics Adviser to learn about genomic sequencing, receive pre-test counselling, support during the waiting period and results, supplemented with brief counselling from a genetic counsellor. Participants in the control arm will receive standard pre-test and post-test counselling for genomic sequencing from a genetic counsellor. Our primary outcome is decisional conflict following pre-test counselling from the Genetics Adviser+genetic counsellor or counsellor alone. Secondary outcomes include: knowledge, satisfaction with decision-making, anxiety, quality of life, psychological impact of results, empowerment, acceptability and economic impact for patients and the health system. A subset of patients will be interviewed to assess user experience. ETHICS AND DISSEMINATION: This study has been approved by Clinical Trials Ontario Streamlined Research Ethics Review System (REB#20-035). Results will be shared through stakeholder workshops, national and international conferences and peer-reviewed journals. TRIAL REGISTRATION NUMBER: NCT04725565.

Omission of Axillary Staging and Survival in Elderly Women With Early Stage Breast Cancer: A Population-Based Cohort Study.

Objectives: Determine if axillary staging is associated with survival in elderly women with breast cancer. Background: Axillary staging in women ≥ 70 years with early-stage breast cancer is controversial. Older randomized evidence has not shown axillary staging improves survival, but recent observational studies have been mixed and widespread de-implementation of the practice has not occurred. Methods: This was a population-based cohort study using the Surveillance, Epidemiology, and End Results registry. Women ≥ 70 years diagnosed with T1-T2 invasive breast cancer from 2005 to 2015 were included. Overlap propensity score weighting was used to adjust for confounders. Overall survival (OS) was determined and hazard ratios (HRs) reported with 95% confidence intervals (CIs). Breast cancer-specific survival (BCSS) was determined using competing risks analysis and subdistribution hazard ratios (sdHRs) reported. Additional adjustment was performed for receipt of chemotherapy and radiotherapy. Results: One hundred forty-four thousand three hundred twenty-nine elderly women were included, of whom 22,621 (15.7%) did not undergo axillary staging. After overlap propensity score weighting, baseline characteristics were well balanced between the 2 groups. Women who did not undergo axillary staging were significantly less likely to receive chemotherapy (adjusted relative risk, 0.58; 95% CI, 0.54-0.62) or radiotherapy (adjusted relative risk, 0.53; 95% CI, 0.52-0.54), and had significantly worse OS (adjusted HR, 1.22; 95% CI, 1.19-1.25), and BCSS (adjusted sdHR, 1.14; 95% CI, 1.08-1.21) compared to those that had staging. Conclusions: These findings suggest elderly women with early-stage breast cancer who do not undergo axillary staging experience worse outcomes. Reasons for this disparity may be multifactorial and require further investigation.

Challenges in Cross-Cultural Communication in Breast Cancer Surgery: Is there a Gender Gap?

The aim of this study is to identify [1] facilitators and barriers to cross-cultural communication with Canadian immigrants during the breast cancer (BC) surgical consultation and [2] the impact of cultural sensitivity training on the perception of cross-cultural communication barriers. A 29-item questionnaire mailed to 450 surgeons was developed based on the Ottawa Decision Support Framework, informed by interviews with BC practitioners and a literature review. The inclusion criteria are English-speaking general surgeons practicing in Vancouver, Montréal, and Toronto, home to > 60% of Canada's immigrant population. The association between surgeon characteristics and barriers to communication was assessed using the chi-square or Fisher's exact test. Univariate and multivariable logistic regression models estimated odds ratios and 95% confidence intervals for the association between frequent perception of each barrier to communication and gender, career stage, and percentage of foreign-born patients. Between June and September 2017, 130 surveys were returned for a 29% response rate. The majority of practitioners reported experiencing language barriers in consultation with immigrant patients (71.4%). In the patient-provider relationship, the most commonly reported barrier was the patient's lack of medical understanding (81.4%). At the system level, the absence of a relative for translation was the most frequently encountered challenge (77.1%). On multivariable analysis adjusting for career stage and percentage of foreign-born patients, female gender of a surgeon was associated with more frequent perception of barriers related to language (OR 4.91, [95% CI 1.43, 16.82; p = 0.0114]), the patient's desired role in decision-making (OR 3.000 [95% CI 1.116-8.059; p = 0.0294]), and poor access to interpreters (OR 3.63 [95% CI 1.24, 10.64; p = 0.0189]). Furthermore, on multivariable analysis adjusting for gender and career stage, surgeons identified as having < 25% foreign-born patients in their practice were less likely to identify communication barriers due to the patients' perception and understanding of their healthcare (OR 0.32 [95% CI 0.11, 0.95; p = 0.041]). Cultural sensitivity training did not appear to be an influential factor though this may be due to the low number of surgeons who received training (5.7%). There are multiple cross-cultural communication challenges. Gender, years in practice, and the cultural diversity of a practice might play significant roles in the identification and perception of these barriers.

Patient and public preferences for being recontacted with updated genomic results: a mixed methods study.

Variants of uncertain significance (VUS) are frequently reclassified but recontacting patients with updated results poses significant resource challenges. We aimed to characterize public and patient preferences for being recontacted with updated results. A discrete choice experiment (DCE) was administered to representative samples of the Canadian public and cancer patients. DCE attributes were uncertainty, cost, recontact modality, choice of results, and actionability. DCE data were analyzed using a mixed logit model and by calculating willingness to pay (WTP) for types of recontact. Qualitative interviews exploring recontact preferences were analyzed thematically. DCE response rate was 60% (n = 1003, 50% cancer patient participants). 31 participants were interviewed (11 cancer patients). Interviews revealed that participants expected to be recontacted. Quantitatively, preferences for how to be recontacted varied based on certainty of results. For certain results, WTP was highest for being recontacted by a doctor with updates ($1075, 95% CI: $845, $1305) and for contacting a doctor to request updates ($1038, 95% CI: $820, $1256). For VUS results, WTP was highest for an online database ($1735, 95% CI: $1224, $2247) and for contacting a doctor ($1705, 95% CI: $1102, $2307). Qualitative data revealed that preferences for provider-mediated recontact were influenced by trust in healthcare providers. Preferences for a database were influenced by lack of trust in providers and desire for control. Patients and public participants support an online database (e.g. patient portal) to recontact for VUS, improving feasibility, and provider-mediated recontact for certain results, consistent with usual care.

Psychological consequences of MRI-based screening among women with strong family histories of breast cancer.

PURPOSE: MRI-based screening in women with a ≥ 25% lifetime risk of breast cancer , but no identifiable genetic mutations may be associated with false positives. This study examined the psychological impact of abnormal screens and biopsies in non-mutation carriers participating in high-risk screening with no personal history of breast cancer. METHODS: Non-mutation carriers participating in the High-Risk Ontario Breast Screening Program at two sites were mailed demographic surveys, psychological scales, and chart review consent. Scales included the Consequences of Screening in Breast Cancer questionnaire, Lerman Breast Cancer Worry Scale, and Worry Interference Scale. Missing data were managed with multiple imputation. Multivariable regression was used to assess whether abnormal screens or biopsies were associated with adverse psychological effects. RESULTS: After contacting 465 participants, 169 non-mutation carriers were included. Median age was 46 years (range 30-65). Over a median 3 years of screening, 63.9% of women experienced at least one abnormal screen, and 24.9% underwent biopsies. Statements relating to cancer worry/anxiety scored highest, with 19.5% indicating they worried "a lot". Higher scores among anxiety-related statements were strongly associated with higher dejection scores. Overall, coping and daily functioning were preserved. Women indicated some positive reactions to screening, including improved existential values and reassurance they do not have breast cancer. Abnormal screens and biopsies were not significantly associated with any psychological scale, even after adjustment for patient characteristics. CONCLUSION: Non-mutation carriers undergoing MRI-based screening had considerable baseline anxiety and cancer worry, although daily functioning was not impaired. Abnormal screens and biopsies did not appear to have adverse psychological effects.

Abnormal screens among nonmutation carriers in the High Risk Ontario Breast Screening Program.

BACKGROUND: The Ontario Breast Screening Program was expanded in 2011 to offer annual MRI and mammography to women with high-risk genetic mutations (e.g., BRCA1/2) and women with strong family histories and ≥25% estimated lifetime risk of breast cancer. Data to support high-risk screening is less clear in the nonmutation carrier group, as MRI has lower specificity among this population. The potential unintended consequences may be considerable and need to be explored. We aimed to describe the frequency of abnormal screens and biopsies. METHODS: Demographic surveys and chart review consent were sent to a sample of 441 individuals enrolled in a high-risk screening program at two tertiary care hospitals in Toronto, Ontario. Retrospective cross-sectional chart review was undertaken for clinicopathologic data. The frequencies of abnormal screens and biopsies were calculated. RESULTS: One hundred sixty-nine nonmutation carriers were included. The majority were white, employed, and highly educated. The median International Breast Cancer Intervention Study lifetime risk of breast cancer was 28.0% (range 24.5%-89.0%). 108 individuals (64%) experienced at least 1 abnormal screen and 13 (8%) had 3 or more over a median 3 years of screening (range 1-6 years). Of 55 biopsies, 3 (5.5%) were malignant. The cancer detection rate was 8.4/1000 screens (95% CI 3.2-22.4). CONCLUSIONS: An MRI-based screening program for nonmutation carriers was effective at diagnosing breast cancer. However, this population experienced a high rate of abnormal screens and intervention. Further research is needed to improve the performance of MRI-based screening in these women.

A Systematic Review of Interventions to Improve Humanism in Surgical Practice.

INTRODUCTION: Humanism in surgery is an emerging priority in surgical education. Its emphasis on the patient experience is a key component of the therapeutic relationship between surgeons and their patients. However, the documented high rates of compassion fatigue and burnout among surgical trainees and staff can serve as a barrier in delivering care with empathy and compassion. As such, this systematic review seeks to characterize the outcomes regarding interventions that aim to broadly improve humanism within surgery. METHODS: A systematic search of 4 electronic databases (EMBASE, MEDLINE, PsycINFO, and Cochrane CENTRAL) was conducted through an independent double selection and extraction process from database inception to March 20, 2020. The inclusion criteria consisted of interventional studies aiming to improve humanism in surgery at all levels of training. A qualitative synthesis and thematic analysis were performed. RESULTS: A total of 19 studies (1 RCT, 14 prospective cohort, and 4 cross-sectional studies), with 20 intervention arms, were included from the initial 745 studies that were eligible for title screening. Studies included a total of 1763 surgical trainees at varying levels of training. Two major strategies for improving humanism were identified: (1) directly through the development of empathetic communication skills (n = 11) and (2) indirectly through programs aimed at reducing levels of compassion fatigue and emotional exhaustion by addressing trainee burnout (n = 9). A total of 70% (14/20) of the studied interventions were successful in improving empathy in surgical trainees. CONCLUSION: Interactive workshops around the principles of empathetic communication with patient simulations and small group learning were effective at improving empathy in surgical trainees. Furthermore, mindfulness-based training and the provision of physical resources to support trainee well-being consistently improved rates of burnout among surgical trainees. Overall, further investigation is necessary to better understand methods of improving empathy in surgery.