Comparing Deprivation vs Vulnerability Index Performance Using Medicare Beneficiary Surgical Outcomes.

Importance: Health care researchers, professionals, payers, and policymakers are increasingly relying on publicly available composite indices of area-level socioeconomic deprivation to address health equity. Implications of index selection, however, are not well understood. Objective: To compare the performance of 2 frequently used deprivation indices using policy-relevant outcomes among Medicare beneficiaries undergoing 3 common surgical procedures. Design, Setting, and Participants: This cross-sectional study examined outcomes among Medicare beneficiaries (65 to 99 years old) undergoing 1 of 3 common surgical procedures (hip replacement, knee replacement, or coronary artery bypass grafting) between 2016 and 2019. Index discriminative performance was compared for beneficiaries residing in tracts with high- and low-deprivation levels (deciles) according to each index. Analyses were conducted between December 2022 and August 2023. Main Outcomes and Measures: Tract-level deprivation was operationalized using 2020 releases of the area deprivation index (ADI) and the social vulnerability index (SVI). Binary outcomes were unplanned surgery, 30-day readmissions, and 30-day mortality. Multivariable logistic regression models, stratified by each index, accounted for beneficiary and hospital characteristics. Results: A total of 2 433 603 Medicare beneficiaries (mean [SD] age, 73.8 [6.1] years; 1 412 968 female beneficiaries [58.1%]; 24 165 Asian [1.0%], 158 582 Black [6.5%], and 2 182 052 White [89.7%]) were included in analyses. According to both indices, beneficiaries residing in high-deprivation tracts had significantly greater adjusted odds of all outcomes for all procedures when compared with beneficiaries living in low-deprivation tracts. However, compared to ADI, SVI resulted in higher adjusted odds ratios (adjusted odds ratios, 1.17-1.31 for SVI vs 1.09-1.23 for ADI), significantly larger outcome rate differences (outcome rate difference, 0.07%-5.17% for SVI vs outcome rate difference, 0.05%-2.44% for ADI; 95% CIs excluded 0), and greater effect sizes (Cohen d, 0.076-0.546 for SVI vs 0.044-0.304 for ADI) for beneficiaries residing in high- vs low-deprivation tracts. Conclusions and Relevance: In this cross-sectional study of Medicare beneficiaries, SVI had significantly better discriminative performance-stratifying surgical outcomes over a wider range-than ADI for identifying and distinguishing between high- and low-deprivation tracts, as indexed by outcomes for common surgical procedures. Index selection requires careful consideration of index differences, index performance, and contextual factors surrounding use, especially when informing resource allocation and health care payment adjustment models to address health equity.

Guideline Concordance of Aspirin Use for Primary Prevention in Adult Outpatients.

Recent guidelines have recommended a reduced role for primary prevention aspirin use, which is associated with increased bleeding risk. This study seeks to characterize guideline-discordant aspirin use among adults in a community care setting. As part of a quality improvement initiative, patients at one internal medicine and one family medicine clinic affiliated with an academic hospital were sent an electronic survey. Patients were included if they were at least 40 years old, had a primary care provider at the specified sites, and were seen in the last year. Patients were excluded if they had an indication for aspirin other than primary prevention. Responses were collected from February 15 to March 16, 2022. Analyses were performed to identify predictors of primary prevention aspirin use and predictors of guideline-discordant aspirin; aspirin users and non-users were compared using Fisher's exact test, independent samples t-tests, and multivariable logistic regression. Of 1460 patients sent a survey, 668 (45.8%) responded. Of respondents, 132 (24.1%) reported aspirin use that was confirmed to be for primary prevention. Overall, 46.2-58.3% of primary prevention aspirin users were potentially taking aspirin contrary to guideline recommendations. Predictors of discordant aspirin use included a history of diabetes mellitus and medication initiation by a primary care provider. In conclusion, primary prevention aspirin use may be overutilized and discordant with recent guideline recommendations for about half of patients, suggesting a need for aspirin de-implementation. These efforts may be best focused at the primary care level.

The landscape of use of NCCN-guideline chemotherapy regimens in stage I-IIIA breast cancer in an integrated healthcare delivery system.

PURPOSE: The National Comprehensive Cancer Network (NCCN) guidelines recommend a variety of drug combinations with specific administration schedules for the treatment of early-stage breast cancer, allowing physicians to deliver treatments recognizing individual patient complexities, including comorbidities, and patient-physician preference. While use of guideline regimens has shifted over time, there is little data to describe changes in how treatment for early-stage breast cancer has evolved over time. METHODS: In a cohort of 34,109 women treated for stage I-IIIA breast cancer between 2006-2019 at Kaiser Permanente Northern California and Kaiser Permanente Washington, we present the changes in chemotherapy regimens over time, and explore use of NCCN-guideline regimens (GR), guideline regimens used when said regimens were not included in guidelines, referred to as time-discordant regimens (TDR), and non-guideline regimens (NGR). Results are presented by drug combination and over time. RESULTS: Among 12,506 women receiving chemotherapy, 77.4% (n = 9681) received GRs, 9.1% (n = 1140) received TDRs, and 13.5% (n = 1685) received NGRs. In 2006, AC-T (cyclophosphamide-doxorubicin, paclitaxel) was the most common regimen, with TC (cyclophosphamide-docetaxel) becoming the most prevalent by 2019. NGRs were more common in cyclophosphamide-methotrexate-5-fluorouracil (CMF); cyclophosphamide-doxorubicin-paclitaxel-trastuzumab (ACTH); and paclitaxel-trastuzumab (TH). The use of GR has increased over time (p-trend < 0.001), while use of NGR (both in terms of administration schedule and drug combination) and TDR have decreased, although patterns vary by drug combination. CONCLUSION: Chemotherapy delivery has changed markedly over time, with a move toward more use of GR. These data are important for understanding the landscape of chemotherapy delivery in community healthcare settings.

Patient Characteristics Associated with Intended Nonguideline Chemotherapy in Women with Stage I to IIIA Breast Cancer.

BACKGROUND: Guidelines informing chemotherapy regimen selection are based on clinical trials with participants who do not necessarily represent general populations with breast cancer. Understanding who receives nonguideline regimens is important for understanding real-world chemotherapy administration and how it relates to patient outcomes. METHODS: Using data from the Optimal Breast Cancer Chemotherapy Dosing (OBCD) study, based at Kaiser Permanente Northern California (2006-2019) and Kaiser Permanente Washington (2004-2015), we use logistic regression to examine the associations between patient characteristics and receipt of nonguideline chemotherapy regimens among 11,293 women with primary stage I to IIIA breast cancer receiving chemotherapy. RESULTS: The use of nonguideline regimens was strongly associated with several factors, including older age [≥80 vs. 18-39 years: OR, 5.25; 95% confidence interval (CI), 3.06-9.00; P-trend = 0.002] and HER2 status (HER2+ vs. HER2-: OR, 3.44; 95% CI, 3.06-3.87) and was less likely in women with larger tumor size (>5 cm vs. 0.1 to ≤0.5 cm: OR, 0.56; 95% CI, 0.36-0.87; P-trend = 0.01) and diagnosed in later years (2012-2019 vs. 2005-2011: OR, 0.80; 95% CI, 0.71-0.90). Factors associated varied by type of nonguideline regimens. For example, women with comorbidity and older age were more likely to receive nonguideline drug combinations in particular, whereas women with larger tumor size were less likely to receive nonguideline administration schedules. CONCLUSIONS: Nonguideline chemotherapy regimens are more likely in certain patient populations. IMPACT: These associations highlight that vulnerable patient populations may be less likely to receive guideline care, and thus, real-world studies are essential for understanding how the use of nonguideline regimens impacts patient outcomes in these groups.

Patient characteristics associated with delayed time to adjuvant chemotherapy among women treated for stage I-IIIA breast cancer.

For patients with breast cancer, delays in chemotherapy initiation have been adversely associated with recurrence and survival. We evaluated patient-level factors associated with delayed chemotherapy initiation, from both diagnosis and surgery, in a community-based cohort of women with early-stage breast cancer. For the Optimal Breast Cancer Chemotherapy Dosing study, we identified a cohort of 34,109 women diagnosed with stage I-IIIA breast cancer at two U.S. integrated healthcare delivery systems between 2004 and 2019. We used logistic regression to calculate odds ratios (OR) and 95% confidence intervals (CI) to identify patient factors associated with delays in chemotherapy initiation after diagnosis (≥90 days) and surgery (≥60 days). Among 10,968 women receiving adjuvant chemotherapy, 21.1% experienced delays in chemotherapy initiation after diagnosis and 21.3% after surgery. Older age, non-Hispanic Black and Hispanic race and ethnicity, and ER+ and/or PR+ disease were associated with increased likelihood of delays to chemotherapy initiation after diagnosis and surgery. People diagnosed in 2012-2019 (vs. 2005-2011), with a higher grade and larger tumor size were less likely to experience delays. Other factors were associated with a higher likelihood of delays specifically from diagnosis (earlier stage, mastectomy vs. breast-conserving surgery), or surgery (higher comorbidity, increased nodal number). Women diagnosed with breast cancer who were at highest risk of progression and recurrence were less likely to experience delays in chemotherapy initiation after diagnosis and surgery. Understanding reasons for chemotherapy delays beyond patient factors may be potentially important to reduce risk of breast cancer recurrence and progression.

Trends in chemotherapy use for early-stage breast cancer from 2006 to 2019.

BACKGROUND: Little is known about how use of chemotherapy has evolved in breast cancer patients. We therefore describe chemotherapy patterns for women with stage I-IIIA breast cancer in the Optimal Breast Cancer Chemotherapy Dosing (OBCD) Study using data from KPNC (Kaiser Permanente Northern California) and KPWA (Kaiser Permanente Washington). FINDINGS: Among 33,670 women, aged 18 + y, diagnosed with primary stage I-IIIA breast cancer at KPNC and KPWA from 2006 to 2019, we explored patterns of intravenous chemotherapy use, defined here as receipt of intravenous cytotoxic drugs and/or anti-HER2 therapies. We evaluated trends in chemotherapy receipt, duration over which chemotherapy was received, and number of associated infusion visits. In secondary analyses, we stratified by receipt of anti-HER2 therapies (trastuzumab and/or pertuzumab), given their longer duration. 38.9% received chemotherapy intravenously, declining from 40.2% in 2006 to 35.6% in 2019 (p-trend < 0.001). Among 13,089 women receiving chemotherapy, neoadjuvant treatment increased (4.1-14.7%; p-trend < 0.001), as did receipt of anti-HER2 therapies (20.8-30.9%) (p-trend < 0.001). The average treatment duration increased (5.3 to 6.0 months; p-trend < 0.001), as did the number of infusion visits (10.8 to 12.5; p-trend < 0.001). For those receiving anti-HER2 therapies, treatment duration and average number of visits decreased; among those not receiving anti-HER2 therapies, number of visits increased, with no change in duration. CONCLUSIONS: While the prevalence of chemotherapy receipt has decreased over time, the use of neoadjuvant chemotherapy has increased, as has use of anti-HER2 therapies; duration and number of administration visits have also increased. Understanding these trends is useful to inform clinical and administrative planning.

Impact of barriers and motivators on intention and confidence to undergo hereditary cancer genetic testing.

Genetic testing for hereditary cancer syndromes can provide lifesaving information allowing for individualized cancer screening, prevention, and treatment. However, the determinants, both barriers and motivators, of genetic testing intention are not well described. A survey of barriers and motivators to genetic testing was emailed to adult patients eligible for genetic testing based on cancer diagnosis who previously have not had genetic testing (n = 201). Associations between barriers/motivators with testing intention and confidence were examined first by correlation followed by multivariable linear regression model holding constant potential covariates. Seven barrier items from two domains (logistics and genetic testing knowledge) were found to significantly negatively correlate with genetic testing intention. Unexpectedly, three barrier items had significant positive correlation with genetic testing intention; these were related to family worry (passing a condition on to future generations) and testing knowledge (needing more information on the genetic testing process and what it has to offer). Ten barrier items had significant negative correlation with confidence to get a genetic test and encompassed four domains: stigma, insurance/genetic discrimination, knowledge, and cost. All motivator items were associated with intention to get a genetic test, while none were associated with confidence. Multivariable analysis yielded six total barriers (five from the knowledge domain, one from cost domain) and two motivators (relieved to know and treatment impact) that were significantly associated with genetic testing intention or confidence when controlling for demographic characteristics. These findings indicate the need for tailored interventions to amplify motivating factors and counter-message barriers to enhance patient motivation and confidence to undergo testing.

Methodology for Using Real-World Data From Electronic Health Records to Assess Chemotherapy Administration in Women With Breast Cancer.

PURPOSE: Identification of patients' intended chemotherapy regimens is critical to most research questions conducted in the real-world setting of cancer care. Yet, these data are not routinely available in electronic health records (EHRs) at the specificity required to address these questions. We developed a methodology to identify patients' intended regimens from EHR data in the Optimal Breast Cancer Chemotherapy Dosing (OBCD) study. METHODS: In women older than 18 years, diagnosed with primary stage I-IIIA breast cancer at Kaiser Permanente Northern California (2006-2019), we categorized participants into 24 drug combinations described in National Comprehensive Cancer Network guidelines for breast cancer treatment. Participants were categorized into 50 guideline chemotherapy administration schedules within these combinations using an iterative algorithm process, followed by chart abstraction where necessary. We also identified patients intended to receive nonguideline administration schedules within guideline drug combinations and nonguideline drug combinations. This process was adapted at Kaiser Permanente Washington using abstracted data (2004-2015). RESULTS: In the OBCD cohort, 13,231 women received adjuvant or neoadjuvant chemotherapy, of whom 10,213 (77%) had their intended regimen identified via the algorithm, 2,416 (18%) had their intended regimen identified via abstraction, and 602 (4.5%) could not be identified. Across guideline drug combinations, 111 nonguideline dosing schedules were used, alongside 61 nonguideline drug combinations. A number of factors were associated with requiring abstraction for regimen determination, including: decreasing neighborhood household income, earlier diagnosis year, later stage, nodal status, and human epidermal growth factor receptor 2 (HER2)+ status. CONCLUSION: We describe the challenges and approaches to operationalize complex, real-world data to identify intended chemotherapy regimens in large, observational studies. This methodology can improve efficiency of use of large-scale clinical data in real-world populations, helping answer critical questions to improve care delivery and patient outcomes.

Assessment of breast cancer chemotherapy dose reduction in an integrated healthcare delivery system.

PURPOSE: Most cytotoxic drugs are dosed using body surface area (BSA), yet not all cancer patients receive the full BSA-determined dose. Prior work suggests that breast cancer patients who are obese are more likely to experience dose reduction than normal weight patients. However, the factors driving dose reduction remain unclear. METHODS: In 452 women diagnosed with stage I-IIIA primary breast cancer at Kaiser Permanente Northern California, we evaluated the association between obesity and dose reduction, and further explored other factors in relation to dose reduction, including various sociodemographic characteristics, tumor characteristics, and comorbidities. Study participants were a part of the Pathways Study, diagnosed between 2006 and 2013 and treated with cyclophosphamide + doxorubicin, followed by paclitaxel (ACT). Dose reduction was assessed using first cycle dose proportion (FCDP) and average relative dose intensity (ARDI), a metric of dose intensity over the course of chemotherapy. RESULTS: Overall, 8% of participants received a FCDP < 90% and 21.2% had an ARDI < 90%, with dose reduction increasing with body mass index. In adjusted logistic regression models, obese women had 4.1-fold higher odds of receiving an ARDI < 90% than normal weight women (95% CI: 1.9-8.9; p-trend = 0.0006). Increasing age was positively associated with an ADRI < 90%, as was the presence of comorbidity. Dose reduction was less common in later calendar years. CONCLUSION: Results offer insight on factors associated with chemotherapy dosing for a common breast cancer regimen. Larger studies are required to evaluate relevance to other regimens, and further work will be needed to determine whether dose reductions impact outcomes in obese women.

Evaluation of Algorithms Using Automated Health Plan Data to Identify Breast Cancer Recurrences.

BACKGROUND: We updated algorithms to identify breast cancer recurrences from administrative data, extending previously developed methods. METHODS: In this validation study, we evaluated pairs of breast cancer recurrence algorithms (vs. individual algorithms) to identify recurrences. We generated algorithm combinations that categorized discordant algorithm results as no recurrence [High Specificity and PPV (positive predictive value) Combination] or recurrence (High Sensitivity Combination). We compared individual and combined algorithm results to manually abstracted recurrence outcomes from a sample of 600 people with incident stage I-IIIA breast cancer diagnosed between 2004 and 2015. We used Cox regression to evaluate risk factors associated with age- and stage-adjusted recurrence rates using different recurrence definitions, weighted by inverse sampling probabilities. RESULTS: Among 600 people, we identified 117 recurrences using the High Specificity and PPV Combination, 505 using the High Sensitivity Combination, and 118 using manual abstraction. The High Specificity and PPV Combination had good specificity [98%, 95% confidence interval (CI): 97-99] and PPV (72%, 95% CI: 63-80) but modest sensitivity (64%, 95% CI: 44-80). The High Sensitivity Combination had good sensitivity (80%, 95% CI: 49-94) and specificity (83%, 95% CI: 80-86) but low PPV (29%, 95% CI: 25-34). Recurrence rates using combined algorithms were similar in magnitude for most risk factors. CONCLUSIONS: By combining algorithms, we identified breast cancer recurrences with greater PPV than individual algorithms, without additional review of discordant records. IMPACT: Researchers should consider tradeoffs between accuracy and manual chart abstraction resources when using previously developed algorithms. We provided guidance for future studies that use breast cancer recurrence algorithms with or without supplemental manual chart abstraction.

Comparison of two area-level socioeconomic deprivation indices: Implications for public health research, practice, and policy.

OBJECTIVES: To compare 2 frequently used area-level socioeconomic deprivation indices: the Area Deprivation Index (ADI) and the Social Vulnerability Index (SVI). METHODS: Index agreement was assessed via pairwise correlations, decile score distribution and mean comparisons, and mapping. The 2019 ADI and 2018 SVI indices at the U.S. census tract-level were analyzed. RESULTS: Index correlation was modest (R = 0.51). Less than half (44.4%) of all tracts had good index agreement (0-1 decile difference). Among the 6.3% of tracts with poor index agreement (≥6 decile difference), nearly 1 in 5 were classified by high SVI and low ADI scores. Index items driving poor agreement, such as high rents, mortgages, and home values in urban areas with characteristics indicative of socioeconomic deprivation, were also identified. CONCLUSIONS: Differences in index dimensions and agreement indicated that ADI and SVI are not interchangeable measures of socioeconomic deprivation at the tract level. Careful consideration is necessary when selecting an area-level socioeconomic deprivation measure that appropriately defines deprivation relative to the context in which it will be used. How deprivation is operationalized affects interpretation by researchers as well as public health practitioners and policymakers making decisions about resource allocation and working to address health equity.

Transgender People's Experiences Sharing Information With Clinicians: A Focus Group-Based Qualitative Study.

PURPOSE: Investigating transgender people's experiences sharing health information in clinical encounters may yield insights for family medicine clinicians. METHODS: This was a qualitative study using a community-based participatory research approach and interpretive description methodology. Seven qualitative focus groups were conducted with 30 transgender adults living in North America. We used purposive sampling to ensure diversity. The focus groups were transcribed verbatim, and 2 investigators independently reviewed and coded each transcript, then they mutually reviewed the transcripts, reconciled their coding, and summarized the codes into themes. Themes were reviewed with community members, participants, and uninvolved clinically oriented investigators for member checking and peer debriefing. RESULTS: Four themes were noted: (1) transgender people often perceive clinicians' questions as voyeuristic, stigmatizing, or self-protective; (2) patients describe being pathologized, denied or given substandard care, or harmed when clinicians learned they are transgender; (3) transgender people frequently choose between risking stigma when sharing information and risking ineffective clinical problem solving if clinicians do not have all the information about their medical histories; (4) improving the safety of transgender people is difficult in the context of contemporary medical systems. CONCLUSIONS: Transgender people often must choose between stigma and potentially suboptimal care. Improvements in medical culture, policies, procedures, and data collection tools are necessary to improve the quality and safety of clinical care for transgender people. Institutional and systems changes may be required to safely and effectively implement sexual orientation and gender identity (SOGI) data collection in clinical settings.

Clinical Implications of Removing Race-Corrected Pulmonary Function Tests for African American Patients Requiring Surgery for Lung Cancer.

Importance: Removal of race correction in pulmonary function tests (PFTs) is a priority, given that race correction inappropriately conflates race, a social construct, with biological differences and falsely assumes worse lung function in African American than White individuals. However, the impact of decorrecting PFTs for African American patients with lung cancer is unknown. Objectives: To identify how many hospitals providing lung cancer surgery use race correction, examine the association of race correction with predicted lung function, and test the effect of decorrection on surgeons' treatment recommendations. Design, Setting, and Participants: In this quality improvement study, hospitals participating in a statewide quality collaborative were contacted to determine use of race correction in PFTs. For hospitals performing race correction, percent predicted preoperative and postoperative forced expiratory volume in 1 second (FEV1) was calculated for African American patients who underwent lung cancer resection between January 1, 2015, and September 31, 2022, using race-corrected and race-neutral equations. US cardiothoracic surgeons were then randomized to receive 1 clinical vignette that differed by the use of Global Lung Function Initiative equations for (1) African American patients (percent predicted postoperative FEV1, 49%), (2) other race or multiracial patients (percent predicted postoperative FEV1, 45%), and (3) race-neutral patients (percent predicted postoperative FEV1, 42%). Main Outcomes and Measures: Number of hospitals using race correction in PFTs, change in preoperative and postoperative FEV1 estimates based on race-neutral or race-corrected equations, and surgeon treatment recommendations for clinical vignettes. Results: A total of 515 African American patients (308 [59.8%] female; mean [SD] age, 66.2 [9.4] years) were included in the study. Fifteen of the 16 hospitals (93.8%) performing lung cancer resection for African American patients during the study period reported using race correction, which corresponds to 473 African American patients (91.8%) having race-corrected PFTs. Among these patients, the percent predicted preoperative FEV1 and postoperative FEV1 would have decreased by 9.2% (95% CI, -9.0% to -9.5%; P < .001) and 7.6% (95% CI, -7.3% to -7.9%; P < .001), respectively, if race-neutral equations had been used. A total of 225 surgeons (194 male [87.8%]; mean [SD] time in practice, 19.4 [11.3] years) were successfully randomized and completed the vignette items regarding risk perception and treatment outcomes (76% completion rate). Surgeons randomized to the vignette with African American race-corrected PFTs were more likely to recommend lobectomy (79.2%; 95% CI, 69.8%-88.5%) compared with surgeons randomized to the other race or multiracial-corrected (61.7%; 95% CI, 51.1%-72.3%; P = .02) or race-neutral PFTs (52.8%; 95% CI, 41.2%-64.3%; P = .001). Conclusions and Relevance: Given the findings of this quality improvement study, surgeons should be aware of changes in PFT testing because removal of race correction PFTs may change surgeons' treatment decisions and potentially worsen existing disparities in receipt of lung cancer surgery among African American patients.

Examining the effects of physician burnout on pain management for patients with advanced lung cancer.

PURPOSE: Physician burnout is generally associated with worse clinical outcomes. The purpose of this study is to examine the effects of physician burnout on the quality of physicians' pain assessment and opioid prescribing for patients with advanced lung cancer. Moreover, we test whether these relationships are moderated by patient-level factors, such as patient race and activation level, that have a demonstrated impact on clinical encounters. METHODS: We conducted a secondary analysis of data from a multisite randomized field experiment. From 2012 to 2016, 96 primary care physicians and oncologists who treated solid tumors were recruited from hospitals and medical sites in three small metropolitan and rural areas in the USA. Physicians saw two unannounced standardized patients who presented with advanced lung cancer. Standardized patients varied across race (Black or White) and activation level (activated, typical). Visits were audio recorded and transcribed. Pain management was evaluated by the quality of pain assessment and opioid prescribing during these visits. RESULTS: Mixed-effects linear regression and generalized mixed-effects modeling showed that higher levels of burnout were associated with a greater likelihood of prescribing an opioid and prescribing stronger opioid doses for patients. These effects were not moderated by patient race or activation level. CONCLUSION: Findings from this work inform our understanding of physician-level factors that impact clinical decision-making in the context of cancer pain management. Specifically, this study identifies the role of physician burnout on the quality of prescribing for patients with advanced lung cancer.

Accuracy of Electronic Health Record-Documented Aspirin for Primary Prevention in Adult Outpatients.

This quality improvement study examines the accuracy of electronic health record (EHR) documentation of aspirin use for primary prevention of atherosclerotic cardiovascular disease in adult outpatients.

Methodologic Approaches for Using Electronic Medical Records to Identify Experiences of Violence in Transgender and Cisgender People: Closing the Gap Between Diagnostic Coding and Lived Experiences.

BACKGROUND: Transgender people experience extreme rates of violence and the electronic medical record (EMR) remains a mostly untapped resource to study the medical sequelae of such experiences. OBJECTIVES: To develop and test a method for identifying experiences of violence using EMR data. RESEARCH DESIGN: Cross-sectional study utilizing EMR data. PEOPLE: Transgender and cisgender people seen at a regional referral center in Upstate New York. MEASURES: We tested the utility of keyword searches and structured data queries to identify specific types of violence at various ages and in various contexts among cohorts of transgender and cisgender people. We compared the effectiveness of keyword searches to diagnosis codes and a screening question, "Are you safe at home?" using McNemar's test. We compared the prevalence of various types of violence between transgender and cisgender cohorts using the χ 2 test of independence. RESULTS: Of the transgender cohort, 47% had experienced some type of violence versus 14% of the cisgender cohort (χ 2P value <0.001). Keywords were significantly more effective than structured data at identifying violence among both cohorts (McNemar P values all <0.05). CONCLUSIONS: Transgender people experience extreme amounts of violence throughout their lives, which is better identified and studied using keyword searches than structured EMR data. Policies are urgently needed to stop violence against transgender people. Interventions are also needed to ensure safe documentation of violence in EMRs to improve care across settings and aid research to develop and implement effective interventions.

Psychosocial factors impacting barriers and motivators to cancer genetic testing.

BACKGROUND: Only a small proportion of patients who qualify for clinical genetic testing for cancer susceptibility get testing. Many patient-level barriers contribute to low uptake. In this study, we examined self-reported patient barriers and motivators for cancer genetic testing. METHODS: A survey comprised of both new and existing measures related to barriers and motivators to genetic testing was emailed to patients with a diagnosis of cancer at a large academic medical center. Patients who self-reported receiving a genetic test were included in these analyses (n = 376). Responses about emotions following testing as well as barriers and motivators prior to getting testing were examined. Group differences in barriers and motivators by patient demographic characteristics were examined. RESULTS: Being assigned female at birth was associated with increased emotional, insurance, and family concerns as well as increased health benefits compared to patients assigned male at birth. Younger respondents had significantly higher emotional and family concerns compared to older respondents. Recently diagnosed respondents expressed fewer concerns about insurance implications and emotional concerns. Those with a BRCA-related cancer had higher scores on social and interpersonal concerns scale than those with other cancers. Participants with higher depression scores indicated increased emotional, social and interpersonal, and family concerns. CONCLUSIONS: Self-reported depression emerged as the most consistent factor influencing report of barriers to genetic testing. By incorporating mental health resources into clinical practice, oncologists may better identify those patients who might need more assistance following through with a referral for genetic testing and the response afterwards.

The Michigan Genetic Hereditary Testing (MiGHT) study's innovative approaches to promote uptake of clinical genetic testing among cancer patients: a study protocol for a 3-arm randomized controlled trial.

BACKGROUND: Although most cancers are sporadic, germline genetic variants are implicated in 5-10% of cancer cases. Clinical genetic testing identifies pathogenic germline genetic variants for hereditary cancers. The Michigan Genetic Hereditary Testing (MiGHT) study is a three-arm randomized clinical trial that aims to test the efficacy of two patient-level behavioral interventions on uptake of cancer genetic testing. METHODS: The two interventions being tested are (1) a virtual genetics navigator and (2) motivational interviewing by genetic health coaches. Eligible participants are adults with a diagnosis of breast, prostate, endometrial, ovarian, colorectal, or pancreatic cancer who meet the National Comprehensive Cancer Network (NCCN) criteria for genetic testing. Participants are recruited through community oncology practices affiliated with the Michigan Oncology Quality Consortium (MOQC) and have used the Family Health History Tool (FHHT) to determine testing eligibility. The recruitment goal is 759 participants, who will be randomized to usual care or to either the virtual genetics navigator or the motivational interviewing intervention arms. The primary outcome will be the proportion of individuals who complete germline genetic testing within 6 months. DISCUSSION: This study addresses patient-level factors which are associated with the uptake of genetic testing. The study will test two different intervention approaches, both of which can help address the shortage of genetic counselors and improve access to care. TRIAL REGISTRATION: This study has been approved by the Institutional Review Board of the University of Michigan Medical School (HUM00192898) and registered in ClinicalTrials.gov (NCT05162846).