Transforming the oncology data paradigm by creating, capturing, and retrieving structured cancer data at the point of care: A Mayo Clinic pilot.

INTRODUCTION: Structured data capture requires defined languages such as minimal Common Oncology Data Elements (mCODE). This pilot assessed the feasibility of capturing 5 mCODE categories (stage, disease status, performance status (PS), intent of therapy and intent to change therapy). METHODS: A tool (SmartPhrase) using existing and custom structured data elements was Built to capture 4 data categories (disease status, PS, intent of therapy and intent to change therapy) typically documented as free-text within notes. Existing functionality for stage was supported by the Build. Participant survey data, presence of data (per encounter), and time in chart were collected prior to go-live and repeat timepoints. The anticipated outcome was capture of >50% sustained over time without undue burden. RESULTS: Pre-intervention (5-weeks before go-live), participants had 1390 encounters (1207 patients). The median percent capture across all participants was 32% for stage; no structured data was available for other categories pre-intervention. During a 6-month pilot with 14 participants across three sites, 4995 encounters (3071 patients) occurred. The median percent capture across all participants and all post-intervention months increased to 64% for stage and 81%-82% for the other data categories post-intervention. No increase in participant time in chart was noted. Participants reported that data were meaningful to capture. CONCLUSIONS: Structured data can be captured (1) in real-time, (2) sustained over time without (3) undue provider burden using note-based tools. Our system is expanding the pilot, with integration of these data into clinical decision support, practice dashboards and potential for clinical trial matching.

Adjuvant platinum versus capecitabine for residual, invasive, triple-negative breast cancer: Patient-reported outcomes in ECOG-ACRIN EA1131.

BACKGROUND: Patient-reported outcomes (PROs) are a better tool for evaluating the experiences of patients who have symptomatic, treatment-associated adverse events (AEs) compared with clinician-rated AEs. The authors present PROs assessing health-related quality of life (HRQoL) and treatment-related neurotoxicity for adjuvant capecitabine versus platinum on the Eastern Cooperative Oncology Group-American College of Radiology Imaging Network (ECOG-ACRIN) EA1131 trial (ClinicalTrials.gov identifier NCT02445391). METHODS: Participants completed the National Comprehensive Cancer Network Functional Assessment of Cancer Therapy-Breast Cancer Symptom Index (NFBSI-16) and the Functional Assessment of Cancer Therapy-Gynecologic Oncology Group neurotoxicity subscale (platinum arm only) at baseline, cycle 3 day 1 (C3D1), 6 months, and 15 months. Because of early termination, power was insufficient to test the hypothesis that HRQoL, as assessed by the NFBSI-16 treatment side-effect (TSE) subscale, would be better at 6 and 15 months in the capecitabine arm; all analyses were exploratory. Means were compared by using t-tests or the Wilcoxon rank-sum test, and proportions were compared by using the χ2 test. RESULTS: Two hundred ninety-six of 330 eligible patients provided PROs. The mean NFBSI-16 TSE subscale score was lower for the platinum arm at baseline (p = .02; absolute difference, 0.6 points) and for the capecitabine arm at C3D1 (p = .04; absolute difference, 0.5 points), but it did not differ at other times. The mean change in TSE subscale scores differed between the arms from baseline to C3D1 (platinum arm, 0.15; capecitabine arm, -0.72; p = .03), but not from baseline to later time points. The mean decline in Functional Assessment of Cancer Therapy-Gynecologic Oncology Group neurotoxicity subscale scores exceeded the minimal meaningful change (1.38 points) from baseline to each subsequent time point (all p < .05). CONCLUSIONS: Despite the similar frequency of clinician-rated AEs, PROs identified greater on-treatment symptom burden with capecitabine and complemented clinician-rated AEs by characterizing patients' experiences during chemotherapy.

Breast cancer and gender-affirming hormone therapy for transgender and gender-diverse (TGD) individuals.

Transgender and gender-diverse (TGD) individuals are at risk for breast cancer, but are less likely to undergo screening mammograms and appear to suffer poorer cancer-related outcomes than cisgender women. Gender-affirming hormone therapy (GAHT) may be lifesaving for TGD individuals from the perspective of affirming their core identities; however, the effects of GAHT on cancer development, progression, and outcomes are poorly understood.

Clinician Perspectives Regarding the Impact of Information Technology on Multidisciplinary Tumor Boards: A National Comprehensive Cancer Network Survey.

PURPOSE: Multidisciplinary tumor boards (MTBs) support high-quality cancer care. Little is known about the impact of information technology (IT) tools on the operational and technical aspects of MTBs. The National Comprehensive Cancer Network EHR Oncology Advisory Group formed a workgroup to investigate the impact of IT tools such as EHRs and virtual conferencing on MTBs. METHODS: The workgroup created a cross-sectional survey for oncology clinicians (eg, pathology, medical, surgical, radiation, etc) participating in MTBs at 31 National Comprehensive Cancer Network member institutions. A standard invitation e-mail was shared with each EHR Advisory Group Member with a hyperlink to the survey, and each member distributed the survey to MTB participants at their institution or identified the appropriate person at their institution to do so. The survey was open from February 26, 2022, to April 26, 2022. Descriptive statistics were applied in the analysis of responses, and a qualitative thematic analysis of open-ended responses was completed. RESULTS: Individuals from 27 institutions participated. Almost all respondents (99%, n = 764 of 767) indicated that their MTBs had participants attending virtually. Most indicated increased attendance (69%, n = 514 of 741) after virtualization with the same or improved quality of discussion (75%, n = 557 of 741) compared with in-person MTBs. Several gaps between the current and ideal state emerged regarding EHR integration: 57% (n = 433 of 758) of respondents noted the importance of adding patients for MTB presentation via the EHR, but only 40% (n = 302 of 747) reported being able to do so most of the time. Similarly, 87% (n = 661 of 760) indicated the importance of documenting recommendations in the EHR, but only 53% (n = 394 of 746) reported this occurring routinely. CONCLUSION: Major gaps include the lack of EHR integration for MTBs. Clinical workflows and EHR functionalities could be improved to further optimize EHRs for MTB management and documentation.

Change in alcohol consumption during the Covid-19 pandemic and associations with mental health and financial hardship: results from a survey of Wisconsin patients with cancer.

PURPOSE: Alcohol consumption increases health risks for patients with cancer. The Covid-19 pandemic may have affected drinking habits for these individuals. We surveyed patients with cancer to examine whether changes in drinking habits were related to mental health or financial effects of the pandemic. METHODS: From October 2020 to April 2021, adult patients (age 18-80 years at diagnosis) treated for cancer in southcentral Wisconsin were invited to complete a survey. Age-adjusted percentages for history of anxiety or depression, emotional distress, and financial impacts of Covid-19 overall and by change in alcohol consumption (non-drinker, stable, decreased, or increased) were obtained via logistic regression. RESULTS: In total, 1,875 patients were included in the analysis (median age 64, range 19-87 years), including 9% who increased and 23% who decreased drinking. Compared to stable drinkers (32% of sample), a higher proportion of participants who increased drinking alcohol also reported anxiety or depression (45% vs. 26%), moderate to severe emotional distress (61% vs. 37%) and viewing Covid-19 as a threat to their community (67% vs. 55%). Decreased (vs. stable) drinking was associated with higher prevalence of depression or anxiety diagnosis, emotional distress, and negative financial impacts of the pandemic. Compared to non-drinkers (36% of sample), participants who increased drinking were more likely to report emotional distress (61% vs. 48%). CONCLUSIONS: Patients with cancer from Wisconsin who changed their alcohol consumption during the Covid-19 pandemic were more likely to report poor mental health including anxiety, depression, and emotional distress than persons whose alcohol consumption was stable. IMPLICATIONS FOR CANCER SURVIVORS: Clinicians working with cancer survivors should be aware of the link between poor mental health and increased alcohol consumption and be prepared to offer guidance or referrals to counseling, as needed.

Advances in the care of breast cancer survivors.

Breast cancer survivors may experience significant after effects from diagnoses of breast cancer and cancer directed therapies. This review synthesizes the evidence about optimal management of the sequelae of a diagnosis of breast cancer. It describes the side effects of chemotherapy and endocrine therapy and evidence based strategies for management of such effects, with particular attention to effects of therapies with curative intent. It includes strategies to promote health and wellness among breast cancer survivors, along with data to support the use of integrative oncology strategies. In addition, this review examines models of survivorship care and ways in which digital tools may facilitate communication between clinicians and patients. The strategies outlined in this review are paramount to supporting breast cancer survivors' quality of life.

NCCN Guidelines® Insights: Survivorship, Version 1.2023.

The NCCN Guidelines for Survivorship are intended to help healthcare professionals address the complex and varied needs of cancer survivors. The NCCN Guidelines provide screening, evaluation, and treatment recommendations for psychosocial and physical problems resulting from adult-onset cancer and its treatment; recommendations to help promote healthy behaviors and immunizations in survivors; and a framework for care coordination. These NCCN Guidelines Insights summarize recent guideline updates and panel discussions pertaining to sleep disorders, fatigue, and cognitive function in cancer survivors.

An evaluation of the effect of lithium on taxane-induced neuropathy.

PURPOSE: No medications are known to protect against chemotherapy-induced peripheral neuropathy (CIPN). Pre-clinical models suggest that lithium may lessen taxane-induced neuropathy. Our aim was to use clinical data to assess whether concurrent lithium usage decreased the frequency or severity of CIPN in patients receiving taxane chemotherapy. METHODS: A retrospective analysis was performed using the electronic health record at Mayo Clinic to identify all patients prescribed concurrent lithium and paclitaxel. Four controls were matched to each case based on clinical variables. Neuropathy severity was graded from available patient and clinician reports. Rates of any neuropathy, dose reduction for CIPN, and treatment discontinuation for CIPN were compared. Conditional regression analysis was performed with propensity score matching. RESULTS: Six patients, receiving concurrent lithium and paclitaxel, were included in the analysis, and compared to 24 control cases. A similar number of paclitaxel cycles were administered to both groups. Any neuropathy was experienced by 33% (2/6) of patients receiving lithium and 38% (9/24) patients who did not receive lithium (p = 1.000). There was no difference in neuropathy severity (p = 0.8565), rate of chemotherapy dose reduction (17% vs. 17%, p = 1.000), or treatment discontinuation (17% vs 4%, p = 0.3655) for CIPN. In the propensity score analysis, the odds ratio for developing any neuropathy was 0.63 (95% confidence interval, 0.06 to 6.96, p = 0.7079). CONCLUSIONS: Lithium does not appear to significantly lessen the risk of neuropathy for patients receiving paclitaxel. IMPLICATIONS FOR CANCER SURVIVORS: Targeted approaches for preventing CIPN are desperately needed. Despite sound scientific rationale, the current study did not identify neuroprotective properties of lithium.

A multi-site trial of an electronic health integrated physical activity promotion intervention in breast and endometrial cancers survivors: MyActivity study protocol.

Despite the known benefits of moderate-to-vigorous physical activity (MVPA) for breast and endometrial cancer survivors, most are insufficiently active, interventions response is heterogeneous, and MVPA programming integration into cancer care is limited. A stepped care approach, in which the least resource-intensive intervention is delivered first and additional components are added based on individual response, is one strategy to enhance uptake of physical activity programming. However, the most effective intervention augmentation strategies are unknown. In this singly randomized trial of post-treatment, inactive breast and endometrial cancer survivors (n = 323), participants receive a minimal intervention including a Fitbit linked with their clinic's patient portal and, in turn, the electronic health record (EHR) with weekly feedback delivered via the portal. MVPA progress summaries are sent to participants' oncology team via the EHR. MVPA adherence is evaluated at 4, 8, 12, 16 and 20 weeks; non-responders (those meeting ≤80% of the MVPA goal over previous 4 weeks) at each timepoint are randomized once for the remainder of the 24-week intervention to one of two "step-up" conditions: (1) online gym or (2) coaching calls, while responders continue with the minimal Fitbit+EHR intervention. The primary outcome is ActiGraph-measured MVPA at 24 and 48 weeks. Secondary outcomes include symptom burden and functional performance at 24 and 48 weeks. This trial will inform development of an effective, scalable, and tailored intervention for survivors by identifying non-responders and providing them with the intervention augmentations necessary to increase MVPA and improve health outcomes. Clinical Trials Registration # NCT04262180.

Telemedicine Use across Medical Specialties and Diagnoses.

BACKGROUND: The COVID-19 (coronavirus disease 2019) pandemic rapidly expanded telemedicine scale and scope. As telemedicine becomes routine, understanding how specialty and diagnosis combine with demographics to impact telemedicine use will aid in addressing its current limitations. OBJECTIVES: To analyze the relationship between medical specialty, diagnosis, and telemedicine use, and their interplay with patient demographics in determining telemedicine usage patterns. METHODS: We extracted encounter and patient data of all adults who scheduled outpatient visits from June 1, 2020 to June 30, 2021 from the electronic health record of an integrated academic health system encompassing a broad range of subspecialties. Extracted variables included medical specialty, primary visit diagnosis, visit modality (video, audio, or in-person), and patient age, sex, self-reported race/ethnicity and 2013 rural-urban continuum code. Six specialties (General Surgery, Family Medicine, Gastroenterology, Oncology, General Internal Medicine, and Psychiatry) ranging from the lowest to the highest quartile of telemedicine use (video and audio) were chosen for analysis. Relative proportions of video, audio, and in-person modalities were compared. We examined diagnoses associated with the most and least frequent telemedicine use within each specialty. Finally, we analyzed associations between patient characteristics and telemedicine modality (video vs. audio/in-person, and video/audio vs. in-person) using a mixed-effects logistic regression model. RESULTS: A total of 2,494,296 encounters occurred during the study period, representing 420,876 unique patients (mean age: 44 years, standard deviation: 24 years, 54% female). Medical diagnoses requiring physical examination or minor procedures were more likely to be conducted in-person. Rural patients were more likely than urban patients to use video telemedicine in General Surgery and Gastroenterology and less likely to use video for all other specialties. Within most specialties, male patients and patients of nonwhite race were overall less likely to use video modality and video/audio telemedicine. In Psychiatry, members of several demographic groups used video telemedicine more commonly than expected, while in other specialties, members of these groups tended to use less telemedicine overall. CONCLUSION: Medical diagnoses requiring physical examination or minor procedures are more likely to be conducted in-person. Patient characteristics (age, sex, rural vs. urban, race/ethnicity) affect video and video/audio telemedicine use differently depending on medical specialty. These factors contribute to a unique clinical scenario which impacts perceived usefulness and accessibility of telemedicine to providers and patients, and are likely to impact rates of telemedicine adoption.

Patterns of Health Portal Use by Regular Portal Users Among Patients With Cancer: Results From the UWCCC Survivorship Program.

PURPOSE: We sought to evaluate the patterns of portal usage among patients with cancer who regularly log in to the portal. These data will inform approaches to facilitate portal use among patients with cancer. PATIENTS AND METHODS: We conducted a retrospective analysis of patient portal usage by patients with cancer at the University of Wisconsin Carbone Cancer Center. Our analysis focuses on patterns of portal use by regular users (≥ 2 portal logins/year, > 3 months) receiving ongoing oncology care between January 1, 2017, and December 31, 2019. Demographics, cancer characteristics, number of oncology visits per month, and portal usage data were extracted. Regular portal users were grouped and compared on the basis of their frequency of use. A linear mixed-effects model was used to determine if the frequency of oncology visits influenced the number of logins. RESULTS: We identified 2076 regular portal users. The median number of portal logins/year was 72 for the entire cohort. Age and race were associated with frequency of portal logins. There was no difference in frequency of portal login on the basis of cancer type or stage. Each additional oncology office visit in a month increased the frequency of portal logins by 3.05 ± 0.11 (SE) within the same month. Messages and test result functionalities were used by 98.7% and 98.9% of the regular users, respectively. Regular users who logged in to portal more frequently used all five studied portal functionalities. CONCLUSION: Patients with cancer who use portals regularly use it more in proximity to an oncology office visit and use multiple available portal functionalities. These findings can direct strategic planning to facilitate portal utilization among those not engaged with this tool.

Pre-Treatment Left Ventricular Ejection Fraction Assessment and Long-Term Cardiovascular Outcomes in Adolescent and Young Adult Lymphoma Survivors.

Purpose: Anthracyclines can cause long-term cardiovascular (CV) morbidity, especially in long-term Adolescent and Young Adult (AYA) lymphoma survivors. Pre-treatment left ventricular ejection fraction (LVEF) evaluation is recommended, although its utility in AYA is not established. We sought to determine the pre-treatment LVEF assessment practices in AYA lymphoma survivors treated with anthracyclines and factors associated with long-term cardiotoxicity. Methods: Through an electronic health records review, we retrospectively identified AYA lymphoma survivors with ≥5 years of follow-up postanthracycline treatment. Pre-treatment and follow-up data were abstracted. CV health conditions were defined as risk factors for CV disease and confirmed CV diagnoses. Survivors who had new CV health conditions at follow-up were compared to those who were not using descriptive statistics and logistic regression. Results: One hundred fifteen AYA lymphoma survivors met the study criteria. Pre-treatment LVEF assessment did not affect chemotherapy decisions. Survivors with pre-treatment CV evaluation had mean follow-up since diagnosis of 8 ± 3.3 years, while survivors without it had 10.3 ± 4.2 years, p < 0.05. Survivors with pre-treatment LVEF assessment received lower cumulative anthracycline dose (240.4 mg/m2 vs. 280.1 mg/m2, p < 0.05) and fewer cycles of chemotherapy (4.8 ± 1.5 vs. 5.6 ± 1.2, p < 0.05). Body mass index (BMI) category at diagnosis and follow-up, in addition to age were associated with development of new CV health conditions, pre-treatment LVEF evaluation was not. Conclusion: Pre-treatment LVEF assessment for AYA lymphoma survivors does not impact oncologic treatment decisions or development of CV health conditions. It may be more valuable to assess and modify CV risk factors such as BMI for CV disease prevention.

NCCN Guidelines® Insights: Survivorship, Version 1.2022.

The NCCN Guidelines for Survivorship are intended to help healthcare professionals who work with survivors to ensure that the survivors' complex and varied needs are addressed. The NCCN Guidelines provide screening, evaluation, and treatment recommendations for the consequences of adult-onset cancer and its treatment; recommendations to help promote physical activity, weight management, and immunizations in survivors; and a framework for care coordination. This article summarizes updates to the NCCN Guidelines pertaining to preventive health for cancer survivors, including recommendations about alcohol consumption and vaccinations.

Supporting Structured Data Capture for Patients With Cancer: An Initiative of the University of Wisconsin Carbone Cancer Center Survivorship Program to Improve Capture of Malignant Diagnosis and Cancer Staging Data.

PURPOSE: Structured data elements within electronic health records are health-related information that can be entered, stored, and extracted in an organized manner at later time points. Tracking outcomes for cancer survivors is also enabled by structured data. We sought to increase structured data capture within oncology practices at multiple sites sharing the same electronic health records. METHODS: Applying engineering approaches and the Plan-Do-Study-Act cycle, we launched dual quality improvement initiatives to ensure that a malignant diagnosis and stage were captured as structured data. Intervention: Close Visit Validation (CVV) requires providers to satisfy certain criteria before closing ambulatory encounters. CVV may be used to track open clinical encounters and chart delinquencies to encourage optimal clinical workflows. We added two cancer-specific required criteria at the time of closing encounters in oncology clinics: (1) the presence of at least one malignant diagnosis on the Problem List and (2) staging all the malignant diagnoses on the Problem List when appropriate. RESULTS: Six months before the CVV implementation, the percentage of encounters with a malignant diagnosis on the Problem List at the time of the encounter was 65%, whereas the percentage of encounters with a staged diagnosis was 32%. Three months after cancer-specific CVV implementation, the percentages were 85% and 75%, respectively. Rates had increased to 90% and 88% more than 2 years after implementation. CONCLUSION: Oncologist performance improved after the implementation of cancer-specific CVV criteria, with persistently high percentages of relevant malignant diagnoses and cancer stage structured data capture 2 years after the intervention.

Early Local Therapy for the Primary Site in De Novo Stage IV Breast Cancer: Results of a Randomized Clinical Trial (EA2108).

PURPOSE: Distant metastases are present in 6% or more of patients with newly diagnosed breast cancer. In this context, locoregional therapy for the intact primary tumor has been hypothesized to improve overall survival (OS), but clinical trials have reported conflicting results. METHODS: Women presenting with metastatic breast cancer and an intact primary tumor received systemic therapy for 4-8 months; if no disease progression occurred, they were randomly assigned to locoregional therapy for the primary site (surgery and radiotherapy per standards for nonmetastatic disease) or continuing sysmetic therapy. The primary end point was OS; locoregional control and quality of life were secondary end points. The trial design provided 85% power to detect a 19.3% absolute difference in the 3-year OS rate in randomly assigned patients. The stratified log-rank test and Cox proportional hazards model were used to compare OS between arms. Cumulative incidence of locoregional progression was compared using Gray's test. Quality-of-life assessment used standard instruments. RESULTS: Of 390 participants enrolled, 256 were randomly assigned: 131 to continued systemic therapy and 125 to early locoregional therapy. The 3-year OS was 67.9% without and 68.4% with early locoregional therapy (hazard ratio = 1.11; 90% CI, 0.82 to 1.52; P = .57). The median OS was 53.1 months (95% CI, 47.9 to not estimable) in the systemic therapy arm and 54.9 months (95% CI, 46.7 to not estimable) in the locoregional therapy arm. Locoregional progression was less frequent in those randomly assigned to locoregional therapy (3-year rate: 16.3% v 39.8%; P < .001). Quality-of-life measures were largely similar between arms. CONCLUSION: Early locoregional therapy for the primary site did not improve survival in patients presenting with metastatic breast cancer. Although it was associated with improved locoregional control, this had no overall impact on quality of life.

Unmet needs and problems related to employment and working as reported by survivors with metastatic breast cancer.

PURPOSE: By 2020, the US population living with metastatic breast cancer (MBC) has exceeded 165,000. A knowledge gap exists regarding the factors affecting work ability for these individuals. We sought to characterize the work status, importance of work, and work-related information needs for women living with MBC. METHODS: We conducted an online survey using an MBC listserv and clinic flyers in 2014-2015. Respondents working at the time of MBC diagnosis were divided into "stably-working" and "no-longer-working" based on employment status at the time of survey. Comparisons were made with chi-square or two-tailed t test. RESULTS: Respondents (n = 133) were predominantly non-Hispanic White (93.2%); 72 were stably-working, while 61 reported no-longer-working. Those no-longer-working were older (54.0 vs 49.5 years old, p < 0.01, Cohen's d = 0.55), further from initial diagnosis of MBC (4.6 vs 3.3 years, p < 0.01, Cohen's d = 0.36), and reported high rates of life interference due to MBC (n = 51, 83.6% vs n = 39, 54.2%, p < 0.01, Cramer's V = 0.32). Stably-working respondents considered work to be important (n = 58, 80.5% vs n = 18, 29.5%, p < 0.01, Cramer's V = 0.57); the top reasons cited were financial and/or insurance (80.4%), importance of staying busy (67.9%), and desire to support themselves and family (64.3%). The stably-working respondents more often valued information on how to talk with employers or co-workers about diagnosis (n = 38, 57.6% vs n = 16, 27.1%; p < 0.01), legal rights in workplace (n = 43, 65.2% vs n = 22, 36.7%; p < 0.01), when to think about stopping work (n = 45, 68.2% vs n = 18, 30%; p < 0.01), and applying for disability (n = 42, 63.6% vs n = 26, 42.6%; p < 0.05), when compared to no-longer-working. CONCLUSION: The decision to stop working may represent a subsequent event driven by cancer progression. This research highlights the ongoing need of information targeting MBC to facilitate the management of employment and financial issues early in the MBC trajectory.