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Background: Exposure to central nervous system (CNS)-active polypharmacy-overlapping exposure to three or more CNS-active medications-is potentially harmful yet common among persons living with dementia (PLWD). The extent to which these medications are prescribed to community-dwelling PLWD by individual clinicians versus distributed across multiple prescribers is unclear., Methods: We identified community-dwelling Medicare beneficiaries with a dementia diagnosis and Medicare Parts A, B, and D coverage for at least one month in 2019. Using fill date and days' supply for prescriptions filled between January 1, 2019 and December 31, 2019, we identified beneficiaries exposed to CNS-active polypharmacy (i.e., >30 days of overlapping exposure to three or more antidepressant, antipsychotic, antiseizure, benzodiazepine, opioid, nonbenzodiazepine benzodiazepine receptor agonists, or skeletal muscle relaxant medications). We examined the number and type of clinicians who contributed to polypharmacy person-days among PLWD., Results: The cohort included 955,074 PLWD who were primarily female (64.0%), were White (78.5%), and had a mean age of 83.4 years (standard deviation 8.0). Notably, 14.3% were exposed to CNS-active polypharmacy. At the person level, 24.6% of PLWD experienced polypharmacy prescribed by a single clinician. Considering total days of exposure, 45.3% of polypharmacy person-days were prescribed by a single clinician. Primary care physicians prescribed 63.0% of polypharmacy person-days and accounted for the plurality of days for all seven medication classes, followed by psychiatrists for antipsychotics and benzodiazepines and primary care advanced practice providers (APPs) for antidepressants and antiseizure medications., Conclusion: In this cross-sectional analysis of Medicare claims data, primary care clinicians (both physicians and APPs) prescribed the majority of medications that contributed to CNS-active polypharmacy for PLWD. Future research is needed to identify strategies to support primary care clinicians in appropriate prescribing of CNS-active medications to PLWD., (© 2024 The Author(s). Journal of the American Geriatrics Society published by Wiley Periodicals LLC on behalf of The American Geriatrics Society.)

Aims: Beyond causing physical discomfort, overactive bladder (OAB) is distressing to patients across a variety of psychosocial domains. In this qualitative component of a larger mixed methods study, we explore patients' lived experience with OAB to understand how this condition impacts individuals on a personal and social level, as well as their experiences interacting with the health care system., Methods: A total of 20 patients and 12 physicians completed a questionnaire and semi-structured interview. The interview guide, developed in an iterative fashion by the authors, included questions about treatment decision making as well as experiences living with or treating OAB; this manuscript focuses on the questions probing lived experiences and interactions between patients and physicians. The interviews were recorded, transcribed and inductively coded and analyzed according to the principles of interpretive description to develop themes., Results: Analysis of patient and physician interviews yielded five key themes: isolation due to OAB diagnosis, social stigma associated with noticeable OAB symptoms, embarrassment from interactions with the health care system, feeling invalidated and dismissed by physicians, and OAB patients as a "vulnerable" population with "desperation" for cure., Conclusions: OAB causes patients marked distress beyond their physical symptoms; it causes feelings of isolation from friends and family and makes them feel embarrassed to discuss their condition with loved ones and physicians alike. Efforts to destigmatize OAB, validate patient experiences, and improve access to OAB care may help diminish the psychosocial burden of OAB., (© 2024 The Author(s). Neurourology and Urodynamics published by Wiley Periodicals LLC.)

Background: Little is known about how patients make decisions about and prioritize, therapies and disease management in eosinophilic esophagitis (EoE). We aimed to systematically identify and characterize patient perspectives and attitudes that influence decision making for EoE management., Methods: To understand the diverse attitudes and values of EoE patients, we designed a study using the Q-method. We iteratively developed 31 statements related to EoE disease management. Participants sorted statements by ranking from +4 (most agree) to -4 (most disagree). By-person factor analysis, using 2- and 3- factor rotation, revealed distinct preference archetypes., Results: Thirty-four adults with EoE (mean age 40.9, 51.4% male, 82.9% White) were recruited from gastroenterology and allergy clinics from a single center. We identified two treatment-centered archetypes: Medication preference, driven by symptoms and the desire to minimize risk of complications, and Natural treatment preference, focusing on identifying trigger foods and diet adherence. Three-factor analysis revealed an additional archetype: Treatment ambivalent, a view of EoE as a mild and episodic (not chronic) disease with low priority to treat. Comparison by factor revealed 54% of those in the natural preference archetype were recategorized as treatment ambivalent, suggesting that they see natural treatment as a less complicated or milder strategy and may be at risk of nonadherence and reduced treatment uptake., Conclusions: We identified three distinct treatment preference archetypes among individuals with EoE, underscoring the need for personalized treatment strategies, especially for those favoring natural approaches but masking ambivalence, and may be at risk for nonadherence or loss to follow-up., (Copyright © 2024 by The American College of Gastroenterology.)

Purpose: To examine receipt of genetic testing and communication with relatives about results into survivorship after diagnosis of breast cancer., Methods: Women age 20-79 years diagnosed with early-stage breast cancer in 2014-2015 and reported to the Georgia and Los Angeles County SEER registries were surveyed approximately 7 months and 6 years after diagnosis (n = 1,412). We asked about genetic counseling, testing, and communication with relatives about results. We categorized women into indications for testing on the basis of clinical guidelines at the time of diagnosis and at the time of the follow-up survey (FUPs)., Results: A total of 47.4% had indications for genetic testing at any time: 28.0% at baseline and an additional 19.4% at the time of the FUPs (only); 71.9% (95% CI, 67.4 to 76.4) of those with a baseline indication reported genetic testing versus 53.3% (95% CI, 47.3 to 59.2) with an indication at FUPs only and 35.0% (95% CI, 31.6 to 38.4) with no indication ( P < .001). There were no significant racial or ethnic differences in receipt of testing, controlling for age and clinical indications ( P = .239); results for genetic counseling were similar. Only 3.4% of survivors had direct-to-consumer genetic testing (DTCt) for cancer. Testers who reported a pathogenic variant (n = 62) were much more likely to have talked to most or all their first-degree adult relatives about genetic testing than those with a variant of unknown significance (n = 49) or a negative finding (n = 419): 62.7% versus 38.8% and 38.0%, respectively ( P < .001)., Conclusion: Many women with indications for genetic counseling and testing into survivorship do not receive it. But those tested reach out to family members on the basis of the clinical relevance of their results. Very few patients obtained DTCt, which suggests that these tests do not substitute for clinical testing in breast cancer survivors.

Aims: Overactive bladder management includes multiple therapeutic options with comparable efficacy but a range of administration modalities and side effects, creating an ideal setting for shared decision-making. This study investigates patient and physician health beliefs surrounding decision-making and expectations for overactive bladder with the aim of better understanding and ultimately improving decision-making in overactive bladder care., Methods: Patient and physician participants completed a questionnaire followed by a semi-structured interview to assess health beliefs surrounding decision making and expectations for overactive bladder treatment. The semi-structured interview guide, developed in an iterative fashion by the authors, probed qualities of overactive bladder therapies patients and physicians valued, their process of treatment selection, and their experiences with therapies., Results: Patients (n = 20) frequently cited treatment invasiveness, efficacy, and safety as the most important qualities that influenced their decision when selecting overactive bladder therapy. Physicians (n = 12) frequently cited safety/contraindications, convenience, cost/insurance, and patient preference as the most important qualities. In our integration analysis, we identified four key themes associated with decision making in overactive bladder care: frustration with inaccessibility of overactive bladder treatments, discordant perception of patient education, diverging acceptability of expected outcomes, and lack of insight into other parties' decisional priorities and control preferences., Conclusions: While both patients and physicians desire to engage in a shared decision-making process when selecting therapies for overactive bladder, this process is challenged by significant divergence between patient and physician viewpoint across key domains., (© 2024 Wiley Periodicals LLC.)

Background: Tumor biomarkers are regularly used to guide breast cancer treatment and clinical trial enrollment. However, there remains a lack of knowledge regarding physicians' perspectives towards biomarkers and their role in treatment optimization, where treatment intensity is reduced to minimize toxicity., Methods: Thirty-nine academic and community oncologists participated in semi-structured qualitative interviews, providing perspectives on optimization approaches to chemotherapy treatment. Interviews were audio-recorded, transcribed, and analyzed by 2 independent coders utilizing a constant comparative method in NVivo. Major themes and exemplary quotes were extracted. A framework outlining physicians' conception of biomarkers, and their comfortability with their use in treatment optimization, was developed., Results: In the hierarchal model of biomarkers, level 1 is comprised of standard-of-care (SoC) biomarkers, defined by a strong level of evidence, alignment with national guidelines, and widespread utilization. Level 2 includes SoC biomarkers used in alternative contexts, in which physicians expressed confidence, yet less certainty, due to a lack of data in certain subgroups. Level 3, or experimental, biomarkers created the most diverse concerns related to quality and quantity of evidence, with several additional modulators., Conclusion: This study demonstrates that physicians conceptualize the use of biomarkers for treatment optimization in successive levels. This hierarchy can be used to guide trialists in the development of novel biomarkers and design of future trials., (© The Author(s) 2023. Published by Oxford University Press.)

Background: Cancer recurrence after treatment is a concern for patients and oncologists alike. The movement towards treatment optimization, with trials testing less than the current standard of care (SoC), complicates this experience. Our objective was to assess oncologists' psychological response to patient recurrence on optimization-focused trials and identify factors that influence those experiences., Methods: Clinical oncologists participated in a semi-structured interview regarding patient enrollment in treatment optimization trials. We identified factors that influence the degree of psychological response that the oncologist may feel after patient recurrence. Residual agreement analysis was used to identify whether differences in reported psychological response was associated with alternative emphases on identified factors., Results: Thirty-six oncologists identified 20 factors spanning five major themes that affected their psychological response to patient recurrence. All oncologists expressed willingness to enroll patients in treatment optimization clinical trials; however, half indicated that they were more likely to experience a negative psychological response after a treatment optimization trial than after a traditional intensification trial, and a quarter reported that patient recurrence on an optimization trial would impact their recommendations for future trial enrollment. Oncologists who reported more negative psychological responses to patient recurrence after participation in an optimization trial were more likely to emphasize introspective factors, while those who reported no difference in response emphasized patient- and process-focused factors., Conclusions: Although most oncologists recognize the importance of treatment optimization trials, a significant proportion indicated a greater potential for psychological distress following patient recurrence in such trials and offered insight into how trial design and the process of patient enrollment can be improved to minimize those negative psychological responses., (© 2023 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

Background & Aims: Tools that can automatically predict incident esophageal adenocarcinoma (EAC) and gastric cardia adenocarcinoma (GCA) using electronic health records to guide screening decisions are needed., Methods: The Veterans Health Administration (VHA) Corporate Data Warehouse was accessed to identify Veterans with 1 or more encounters between 2005 and 2018. Patients diagnosed with EAC (n = 8430) or GCA (n = 2965) were identified in the VHA Central Cancer Registry and compared with 10,256,887 controls. Predictors included demographic characteristics, prescriptions, laboratory results, and diagnoses between 1 and 5 years before the index date. The Kettles Esophageal and Cardia Adenocarcinoma predictioN (K-ECAN) tool was developed and internally validated using simple random sampling imputation and extreme gradient boosting, a machine learning method. Training was performed in 50% of the data, preliminary validation in 25% of the data, and final testing in 25% of the data., Results: K-ECAN was well-calibrated and had better discrimination (area under the receiver operating characteristic curve [AuROC], 0.77) than previously validated models, such as the Nord-Trøndelag Health Study (AuROC, 0.68) and Kunzmann model (AuROC, 0.64), or published guidelines. Using only data from between 3 and 5 years before index diminished its accuracy slightly (AuROC, 0.75). Undersampling men to simulate a non-VHA population, AUCs of the Nord-Trøndelag Health Study and Kunzmann model improved, but K-ECAN was still the most accurate (AuROC, 0.85). Although gastroesophageal reflux disease was strongly associated with EAC, it contributed only a small proportion of gain in information for prediction., Conclusions: K-ECAN is a novel, internally validated tool predicting incident EAC and GCA using electronic health records data. Further work is needed to validate K-ECAN outside VHA and to assess how best to implement it within electronic health records., (Copyright © 2023 AGA Institute. All rights reserved.)

Background: Clinical guidelines recommend that older patients (65+) with mild cognitive impairment (MCI) and early-stage dementia receive similar guideline-concordant care after cardiovascular disease (CVD) events as those with normal cognition (NC). However, older patients with MCI and dementia receive less care for CVD and other conditions than those with NC. Whether physician recommendations for guideline-concordant treatments after two common CVD events, acute myocardial infarction (AMI) and acute ischemic stroke (stroke), differ between older patients with NC, MCI, and early-stage dementia is unknown., Objective: To test the influence of patient cognitive status (NC, MCI, early-stage dementia) on physicians' recommendations for guideline-concordant treatments for AMI and stroke., Design: We conducted two parallel, randomized survey studies for AMI and stroke in the US using clinical vignettes where the hypothetical patient's cognitive status was randomized between physicians., Participants: The study included cardiologists, neurologists, and generalists who care for most patients hospitalized for AMI and stroke., Main Measures: The primary outcome was a composite quality score representing the number of five guideline-concordant treatments physicians recommended for a hypothetical patient after AMI or stroke., Key Results: 1,031 physicians completed the study (58.5% response rate). Of 1,031 respondents, 980 physicians had complete information. After adjusting for physician factors, physicians recommended similar treatments after AMI and stroke in hypothetical patients with pre-existing MCI (adjusted ratio of expected composite quality score, 0.98 [95% CI, 0.94, 1.02]; P = 0.36) as hypothetical patients with NC. Physicians recommended fewer treatments to hypothetical patients with pre-existing early-stage dementia than to hypothetical patients with NC (adjusted ratio of expected composite quality score, 0.90 [0.86, 0.94]; P < 0.001)., Conclusion: In these randomized survey studies, physicians recommended fewer guideline-concordant AMI and stroke treatments to hypothetical patients with early-stage dementia than those with NC. We did not find evidence that physicians recommend fewer treatments to hypothetical patients with MCI than those with NC., (© 2023. The Author(s), under exclusive licence to Society of General Internal Medicine.)

Background: Sexual orientation and gender identity (SOGI) data collection in community oncology practices is critical to identify and address cancer inequities, but less than 20% of NCI Community Oncology Research Program (NCORP)-affiliated practices regularly collect SOGI data despite widespread recommendations. We evaluated multilevel barriers and facilitators for SOGI data collection at NCORP practices., Methods: We conducted 14 semi-structured interviews at seven purposefully sampled NCORP oncology practices. We interviewed one clinician (oncologist, advanced practice provider) and one clinic staff member per practice. Thematic analysis informed by the Consolidated Framework for Implementation Research (CFIR) was conducted to identify barriers and facilitators., Results: Thematic saturation occurred after interviews at six practices and was confirmed with interviews at an additional practice. Participants highlighted multilevel barriers including low levels of understanding, information technology infrastructure, and perceived low relative priority. Not understanding the role of SOGI data in oncology care contributed to cis-heteronormative culture. At the clinic level, this culture coincided with a lack of processes and policies for collecting SOGI from all patients. At the care team level, perceived irrelevance to oncology care was related to discomfort asking SOGI, fear of patient discomfort, and limited awareness of SOGI in electronic health records. Suggested solutions included: normalizing asking SOGI questions, giving patients privacy to complete SOGI, and clarifying clinical relevance., Conclusions: SOGI data collection barriers stemmed from perceptions that SOGI disclosure does not influence care quality. Oncology teams may benefit from training on culturally sensitive SOGI collection, education on SOGI data relevance to oncology practices, and support for implementing SOGI data collection policies., (© 2023 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

Purpose: Little is known about the factors contributing to the receipt of non-recommended surveillance testing among early-stage breast cancer survivors. We assessed primary care providers (PCP) attitudes about and tendency to order non-recommended surveillance testing for asymptomatic early-stage breast cancer survivors post-adjuvant chemotherapy., Methods: A stratified random sample of PCPs identified by early-stage breast cancer survivors were surveyed (N = 518, 61% response rate). PCPs were asked how likely they would be to order bone scans, imaging and/or tumor marker testing using a clinical vignette of an early-stage asymptomatic patient where these tests are non-recommended. A composite tendency to order score was created and categorized by tertiles (low, moderate, high). PCP-reported factors associated with high and moderate tendency to order non-recommended testing (vs. low) were estimated using multivariable, multinomial logistic regression., Results: In this sample, 26% reported a high tendency to order non-recommended surveillance tests during survivorship for early-stage breast cancer survivors. PCPs who identified as family practice physicians and PCPs reporting more confidence in ordering surveillance testing were more likely to report a high tendency to order non-recommended testing (vs. low) ((aOR family practice 2.09, CI 1.2, 3.8; aOR more confidence 1.9, CI 1.1, 3.3)., Conclusions: In this population-based sample of PCPs caring for breast cancer survivors, over a quarter of PCPs reported they would order non-recommended surveillance testing for asymptomatic early-stage breast cancer survivors. Efforts to better support PCPs and disseminate information about appropriate surveillance for cancer survivors are warranted., (© 2023. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Background: Cancer and dementia are becoming increasingly common co-occurring conditions among older adults. Yet, the influence of participant cognitive status on the validity of self-reported data among older adults in population-based cohorts is unknown. We thus compared self-reported cancer diagnoses in the U.S. Health and Retirement Study (HRS) against claims from linked Medicare records to ascertain the validity of self-reported diagnoses by participant cognitive and proxy interview status., Methods: Using data from HRS participants aged ≥67 who had at least 90% continuous enrollment in fee-for-service Medicare, we examined the validity of self-reported first incident cancer diagnoses from biennial HRS interviews against diagnostic claim records in linked Medicare data (reference standard) for interviews from 2000 to 2016. Cognitive status was classified as normal, cognitive impairment no dementia (CIND), or dementia using the Langa-Weir method. We calculated the sensitivity, specificity, and κ for cancer diagnosis., Results: Of the 8 280 included participants, 23.6% had cognitive impairment without dementia (CIND) or dementia, and 10.7% had a proxy respondent due to an impairment. Self-reports of first incident cancer diagnoses for participants with normal cognition had 70.2% sensitivity and 99.8% specificity (κ = 0.79). Sensitivity declined substantially with cognitive impairment and proxy response (56.7% for CIND, 53.0% for dementia, 60.0% for proxy respondents), indicating poor validity for study participants with CIND, dementia, or a proxy respondent., Conclusions: Self-reported cancer diagnoses in the U.S. HRS have poor validity for participants with cognitive impairment, dementia, or a proxy respondent. Population-based cancer research among older adults will be strengthened with linkage to Medicare claims., (© The Author(s) 2022. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Objective: To evaluate trends, racial disparities, and opportunities to improve the timing and location of hospice referral for women dying of ovarian cancer., Methods: This retrospective claims analysis included 4258 Medicare beneficiaries over age 66 diagnosed with ovarian cancer who survived at least 6 months after diagnosis, died between 2007 and 2016, and enrolled in a hospice. We examined trends in timing and clinical location (outpatient, inpatient hospital, nursing/long-term care, other) of hospice referrals and associations with patient race and ethnicity using multivariable multinomial logistic regression., Results: In this sample, 56% of hospice enrollees were referred to a hospice within a month of death, and referral timing did not vary by patient race. Referrals were most commonly inpatient hospital (1731 (41%) inpatient, 703 (17%) outpatient, 299 (7%) nursing/long-term care, 1525 (36%) other), with a median of 6 inpatient days prior to hospice enrollment. Only 17% of hospice referrals were made in an outpatient clinic, but participants had a median of 1.7 outpatient visits per month in the 6 months prior to hospice referral. Referral location varied by patient race, with non-Hispanic black people experiencing the most inpatient referrals (60%). Hospice referral timing and location trends did not change between 2007 and 2016. Compared with individuals referred to a hospice in an outpatient setting, individuals referred from an inpatient hospital setting had more than six times the odds of a referral in the last 3 days of life (OR=6.5, 95% CI 4.4 to 9.8) versus a referral more than 90 days before death., Conclusion: Timeliness of hospice referral is not improving over time despite opportunities for earlier referral across multiple clinical settings. Future work delineating how to capitalize on these opportunities is essential for improving the timeliness of hospice care., Competing Interests: Competing interests: None declared., (© IGCS and ESGO 2023. No commercial re-use. See rights and permissions. Published by BMJ.)

Purpose: As outcomes improve in early-stage breast cancer, clinical trials are undergoing a paradigm shift from intensification trials (more therapy) to improve survival to optimization trials, which assess the potential for using less toxic therapy while preserving survival outcomes. However, little is known about physician perspectives in community and academic settings about possible barriers and facilitators that could affect accrual to optimization clinical trials and the generalizability of future findings., Methods: We conducted a qualitative study with semistructured interviews of medical oncologists from different academic and community practices to assess their perspectives on optimization trials. Interviews were audio-recorded and transcribed. Three independent coders used a content analysis approach to analyze transcripts using NVivo. Major themes and exemplary quotes were extracted., Results: All 39 physicians reported that they would enroll patients in optimization clinical trials. Oncologists highlighted specific reasons to consider optimization trials. These included quality-of-life improvement by reducing toxicity, reduction in financial toxicity, fertility preservation, ability to avoid chemotherapy, minimization of overtreatment in patients with comorbid conditions, personalized treatment, opportunities to test novel therapies, and leveraging the availability of targeted therapies. Oncologists also identified accrual barriers, such as tumor-specific biology, individual (host) factors, prognostic markers of risk, access to therapies, provider experience, and system constraints. They voiced recommendations regarding preliminary data, trial design, and tools to support enrollment in optimization trials., Conclusion: Although oncologists are generally willing to enroll patients on optimization clinical trials, barriers affect their acceptance. A scientific focus on overcoming these barriers is needed to support future enrollment on trials tailoring therapy on the basis of risk and potential benefit to allow true personalization of treatment.

Background: Historically, clinical trials involved adding novel agents to standard of care to improve survival. There has been a shift to an individualized approach with testing less intense treatment, particularly in breast cancer where risk of recurrence is low. Little is known about physician perspectives on delivering less intense treatment for patients who are not well represented in clinical trials., Methods: Open-ended, individual qualitative interviews with medical oncologists explored their perspectives on trials that test less intense treatment for patients with cancer, with a focus on breast cancer. Interviews were audio-recorded and transcribed. Four independent coders utilized a content analysis approach to analyze transcripts using NVivo. Major themes and exemplary quotes were extracted., Results: Of the 39 participating physicians, 61.5% felt comfortable extrapolating, 30.8% were hesitant, and 7.7% would not feel comfortable extrapolating trial outcomes to underrepresented populations. Facilitators of comfort included the sentiment that "biology is biology" (such that the cancer characteristics were what mattered), the strength of the evidence, inclusion of subset analysis on underrepresented populations, and prior experience making decisions with limited data. Barriers to extrapolation included potential harm over the patient's lifetime, concerns about groups that had minimal participants, application to younger patients, and extending findings to diverse populations. Universally, broader inclusion in trials testing lowering chemotherapy was desired., Conclusions: The majority (92%) of physicians reported that they would de-implement treatment for patients poorly represented in clinical trials testing less treatment, while expressing concerns about applicability to specific subpopulations. Further work is needed to increase clinical trial representation of diverse populations to safely and effectively optimize treatment for patients with cancer., Trial Registration: NCT03248258., (© The Author(s) 2022. Published by Oxford University Press.)

Background: The influence of common medical comorbidities on mortality and racial/ethnic disparities in mortality among women with metastatic breast cancer remains largely unknown., Methods: In this longitudinal study, women with newly diagnosed stage IV breast cancer were identified in a large, diverse, integrated healthcare delivery system from January 2009 to December 2017 (n = 995) and followed through December 31, 2018, for all-cause (overall) and breast cancer-specific mortality via electronic health records. We computed overall and breast cancer-specific mortality rates by race/ethnicity and Elixhauser comorbidity index (ECI). Multivariable-adjusted hazard ratios (HR) assessing the influence of race/ethnicity and comorbidity status on overall and breast cancer-specific mortality were estimated using proportional hazards regression adjusted for age, breast cancer subtype, geocoded income, and palliative cancer treatments., Results: Nearly 17% of this cohort had diabetes and 45% had hypertension. Overall, 644 deaths occurred in the cohort (median follow-up time of 1.8 years), of which 88% were breast cancer related. The risk of overall mortality was increased in Asian/Pacific Islander (PI; adjusted HR = 1.45; 95% CI, 1.10-1.92) and African American/Black women (adjusted HR = 1.34; 95% CI, 1.02-1.76) when compared with white women. Women with more comorbidities (ECI ≥ 5) had more than 3-fold higher overall mortality rate than those without any comorbidities [602/1,000 person-year (PY) vs. 175/1,000 PY]. Similar associations were found for breast cancer-specific mortality., Conclusions: Medical comorbidities are associated with an increased risk of overall mortality among women with de novo metastatic disease and may influence racial/ethnic disparities in mortality., Impact: Optimizing the management of medical comorbidities in metastatic breast cancer patients may also help reduce disparities in breast cancer-related mortality., (©2022 American Association for Cancer Research.)

Purpose: Men on active surveillance for favorable-risk prostate cancer do not receive all the recommended testing. Reasons for variation in receipt are unknown., Materials and Methods: We combined prospective registry data from the Michigan Urological Surgery Improvement Collaborative, a collaborative of 46 academic and community urology practices across Michigan, with insurance claims from 2014 to 2018 for men on active surveillance for favorable-risk prostate cancer. We defined receipt of recommended surveillance according to the collaborative's low-intensity criteria as: annual prostate specific antigen testing and either magnetic resonance imaging or prostate biopsy every 3 years. We assessed receipt of recommended surveillance among men with ≥36 months of followup (246). We conducted multilevel analyses to examine the influence of the urologist, urologist and primary care provider visits, and patient demographic and clinical factors on variation in receipt., Results: During 3 years of active surveillance, just over half of men (56.5%) received all recommended surveillance testing (69.9% annual prostate specific antigen testing, 72.8% magnetic resonance imaging/biopsy). We found 19% of the variation in receipt was attributed to individual urologists. While increasing provider visits were not significantly associated with receipt, older men were less likely to receive magnetic resonance imaging/biopsy (≥75 vs <55 years, adjusted odds ratio 0.07; 95% confidence interval 0.01-0.81)., Conclusions: Nearly half of men on active surveillance for favorable-risk prostate cancer did not receive all recommended surveillance. While urologists substantially influenced receipt of recommended testing, exploring how to leverage patients and their visits with their primary care providers to positively influence receipt appears warranted.

Objective: To evaluate whether completing a decision aid, Personal Patient Profile - Prostate (P3P), prior to prostatectomy, affects self-reported bother from post-prostatectomy urinary incontinence and erectile dysfunction., Materials and Methods: This retrospective analysis included data from men with newly diagnosed clinically localized, very low to intermediate risk prostate cancer who elected for prostatectomy within the Michigan Urological Surgery Improvement Collaborative between 2018-2021. Multivariable logistic regression models were used to estimate the association between P3P use and bother from post prostatectomy erectile dysfunction and urinary incontinence as measured by the Expanded Prostate Cancer Index Composite (EPIC-26)., Results: Among the 3987 patients included, 7% used P3P (n = 266). Men who used P3P reported significantly less bother from erectile dysfunction at 6 months vs non-users (aOR 0.42 [95% CI 0.27-0.66]). At 12 months, the effect of P3P on bother from erectile dysfunction was not statistically significant (aOR 0.62 [95% CI 0.37-1.03]). Men who used P3P did not have a statistically significant difference in bother from urinary incontinence (3-month: aOR 0.56 [95% CI 0.30-1.06]; 6-month; aOR 0.79 [95% CI 0.31-1.97])., Conclusion: Within the stated limitations of this study, we find that use of a decision aid for localized prostate cancer was associated with decreased odds of men being bothered from sexual dysfunction but not urinary incontinence at 6 months post prostatectomy., (Published by Elsevier Inc.)

Background: Little is known about how patients with eosinophilic esophagitis (EoE) experience their symptoms, receive care, and cope with their disease. Patients commonly seek peer support from online communities, which provide insights on unmet needs and barriers to care. We performed a qualitative analysis of electronic health forums to characterize patient-to-patient conversations about EoE symptoms and the experience of disease., Methods: We identified three publicly accessible electronic health forums hosting EoE communities. Conversation threads posted between July 2018 and June 2020 were coded using emergent and a priori codes based on the THRIVE conceptual framework of coping with chronic illness., Results: Of 659 threads (4,933 posts) collected over two years, a random sample of 240 threads (30 per 3-month quarter) were selected for analysis. Thematic saturation was reached after 172 threads. Patient experience of EoE was driven by their perspectives in four key domains: (i) perception of EoE as episodic rather than chronic, (ii) treatment choices, (iii) personal definitions of success in the disease, and (iv) views of providers., Conclusion: Online health communities are a valuable and unfiltered source of patient perspectives that can be used to understand patient needs and goals. EoE patients interpret their disease as sporadic events and lack reliable sources of knowledge, which may influence how patients prioritize treatment. If providers are to succeed in providing high-quality EoE care, they need to equip themselves with evidence-based knowledge, engage in shared decision making, and look outside of clinical settings to recognize barriers to disease management., (© The Author(s) 2021. Published by Oxford University Press on behalf of International Society for Diseases of the Esophagus.)

Background: Older patients (65+) with mild cognitive impairment (MCI) receive less guideline-concordant care for cardiovascular disease (CVD) and other conditions than patients with normal cognition (NC). One potential explanation is that patients with MCI want less treatment than patients with NC; however, the treatment preferences of patients with MCI have not been studied., Objective: To determine whether patients with MCI have different treatment preferences than patients with NC., Design: Cross-sectional survey conducted at two academic medical centers from February to December 2019 PARTICIPANTS: Dyads of older outpatients with MCI and NC and patient-designated surrogates., Main Measures: The modified Life-Support Preferences-Predictions Questionnaire score measured patients' preferences for life-sustaining treatment decisions in six health scenarios including stroke and acute myocardial infarction (range, 0-24 treatments rejected with greater scores indicating lower desire for treatment)., Key Results: The survey response rate was 73.4%. Of 136 recruited dyads, 127 (93.4%) completed the survey (66 MCI and 61 NC). The median number of life-sustaining treatments rejected across health scenarios did not differ significantly between patients with MCI and patients with NC (4.5 vs 6.0; P=0.55). Most patients with MCI (80%) and NC (80%) desired life-sustaining treatments in their current health (P=0.99). After adjusting for patient and surrogate factors, the difference in mean counts of rejected treatments between patients with MCI and patients with NC was not statistically significant (adjusted ratio, 1.08, 95% CI, 0.80-1.44; P=0.63)., Conclusion: We did not find evidence that patients with MCI want less treatment than patients with NC. These findings suggest that other provider and system factors might contribute to patients with MCI getting less guideline-concordant care., (© 2021. Society of General Internal Medicine.)

Background: The global population of older cancer survivors is growing. However, the intersections of aging-related health risks across the cancer control continuum are poorly understood, limiting the integration of aging into cancer control research and practice. The objective of this study was to review the state of science and provide future directions to improve the quality of evidence in 6 priority research areas in cancer and aging., Methods: The authors identified priority research areas in cancer and aging through an evidence-based Research Jam process involving 32 investigators and trainees from multiple disciplines and research centers in aging and cancer; then, they conducted a narrative review of the state of the science and future directions to improve the quality of evidence in these research areas. Priority research areas were defined as those in which gaps in scientific evidence or clinical practice limit the health and well-being of older adults with cancer., Results: Six priority research areas were identified: cognitive and physical functional outcomes of older cancer survivors, sampling issues in studies of older cancer survivors, risk and resilience across the lifespan, caregiver support and well-being, quality of care for older patients with cancer, and health disparities. Evidence in these areas could be improved through the incorporation of bias reduction techniques into longitudinal studies of older cancer survivors, novel data linkage, and improved representation of older adults in cancer research., Conclusions: The priority research areas and methodologies identified here may be used to guide interdisciplinary research and improve the quality of evidence on cancer and aging., (© 2022 The Authors. Cancer published by Wiley Periodicals LLC on behalf of American Cancer Society.)

Purpose: End-of-life care for women with ovarian cancer is persistently aggressive, but factors associated with overuse are not well understood. We evaluated physician-level variation in receipt of aggressive end-of-life care and examined physician-level factors contributing to this variation in the SEER-Medicare data set., Methods: Medicare beneficiaries with ovarian cancer who died between 2000 and 2016 were included if they were diagnosed after age 66 years, had complete Medicare coverage between diagnosis and death, and had outpatient physician evaluation and management for their ovarian cancer. Using multilevel logistic regression, we examined physician variation in no hospice enrollment, late hospice enrollment (≤ 3 days), > 1 emergency department visit, an intensive care unit stay, terminal hospitalization, > 1 hospitalization, receiving a life-extending or invasive procedure, and chemotherapy (in the last 2 weeks)., Results: In this sample of 6,288 women, 51% of women received at least one form of aggressive end-of-life care. Most common were no hospice enrollment (28.9%), an intensive care unit stay (18.6%), and receipt of an invasive procedure (20.7%). For not enrolling in hospice, 9.9% of variation was accounted for by physician clustering ( P < .01). Chemotherapy had the highest physician variation (12.4%), with no meaningful portion of the variation explained by physician specialty, volume, region, or patient characteristics., Conclusion: In this study, a meaningful amount of variation in aggressive end-of-life care among women dying of ovarian cancer was at the physician level, suggesting that efforts to improve the quality of this care should include interventions aimed at physician practices and decision making in end-of-life care., Competing Interests: Lauren P. WallnerHonoraria: Kaiser PermanenteNo other potential conflicts of interest were reported.

Context: Little is known about provider specialties involved in thyroid cancer diagnosis and management., Objective: Characterize providers involved in diagnosing and treating thyroid cancer., Design/setting/participants: We surveyed patients with differentiated thyroid cancer from the Georgia and Los Angeles County Surveillance, Epidemiology and End Results registries (N = 2632, 63% response rate). Patients identified their primary care physicians (PCPs), who were also surveyed (N = 162, 56% response rate)., Main Outcome Measures: (1) Patient-reported provider involvement (endocrinologist, surgeon, PCP) at diagnosis and treatment; (2) PCP-reported involvement (more vs less) and comfort (more vs less) with discussing diagnosis and treatment., Results: Among thyroid cancer patients, 40.6% reported being informed of their diagnosis by their surgeon, 37.9% by their endocrinologist, and 13.5% by their PCP. Patients reported discussing their treatment with their surgeon (71.7%), endocrinologist (69.6%), and PCP (33.3%). Physician specialty involvement in diagnosis and treatment varied by patient race/ethnicity and age. For example, Hispanic patients (vs non-Hispanic White) were more likely to report their PCP informed them of their diagnosis (odds ratio [OR]: 1.68; 95% CI, 1.24-2.27). Patients ≥65 years (vs <45 years) were more likely to discuss treatment with their PCP (OR: 1.59; 95% CI, 1.22-2.08). Although 74% of PCPs reported discussing their patients' diagnosis and 62% their treatment, only 66% and 48%, respectively, were comfortable doing so., Conclusions: PCPs were involved in thyroid cancer diagnosis and treatment, and their involvement was greater among older patients and patients of minority race/ethnicity. This suggests an opportunity to leverage PCP involvement in thyroid cancer management to improve health and quality of care outcomes for vulnerable patients., (© The Author(s) 2021. Published by Oxford University Press on behalf of the Endocrine Society. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: The US Health Retirement Study (HRS) is an ongoing population-representative cohort of US adults ages >50 with rich data on health during aging. Self-reported cancer diagnoses have been collected since 1998, but they have not been validated. We compared self-reported cancer diagnoses in HRS interviews against diagnostic claims from linked Medicare records., Methods: Using HRS-Medicare linked data, we examined the validity of first incident cancer diagnoses self-reported in biennial interviews from 2000 to 2016 against ICD-9 and ICD-10 diagnostic claim records as the gold standard. Data were from 8,242 HRS participants ages ≥65 with 90% continuous enrollment in fee-for-service Medicare. We calculated the sensitivity, specificity, and κ for first incident invasive cancer diagnoses (all cancers combined, and each of bladder, breast, colorectal/anal, uterine, kidney, lung, and prostate cancers) cumulatively over the follow-up and at each biennial study interview., Results: Overall, self-reports of first incident cancer diagnoses from 2000 to 2016 had 73.2% sensitivity and 96.2% specificity against Medicare claims (κ = 0.73). For specific cancer types, sensitivities ranged from 44.7% (kidney) to 75.0% (breast), and specificities ranged from 99.2% (prostate) and 99.9% (bladder, uterine, and kidney). Results were similar in sensitivity analyses restricted to individuals with 100% continuous fee-for-service Medicare enrollment and when restricted to individuals with at least 24 months of Medicare enrollment., Conclusions: Self-reported cancer diagnoses in the HRS have reasonable validity for use in population-based research that is maximized with linkage to Medicare., Impact: These findings inform the use of the HRS for population-based cancer and aging research., (©2021 American Association for Cancer Research.)

Importance: Surveillance imaging and visits are costly and have not been shown to improve oncologic outcomes for patients with head and neck cancer (HNC). However, the benefit of surveillance visits may extend beyond recurrence detection. To better understand surveillance and potentially develop protocols to tailor current surveillance paradigms, it is important to elicit the perspectives of the clinicians who care for patients with HNC., Objective: To characterize current surveillance practices and explore clinician attitudes and beliefs on deintensifying surveillance for patients with HNC., Design, Setting, and Participants: This qualitative study was performed from January to March 2021. Guided by an interpretive description approach, interviews were analyzed to produce a thematic description. Data analysis was performed from March to April 2021. Otolaryngologists and radiation oncologists were recruited using purposive and snowball sampling strategies., Main Outcomes and Measures: The main outcomes were current practice, attitudes, and beliefs about deintensifying surveillance and survivorship as well as patients' values and perspectives collected from interviews of participating physicians., Results: Twenty-one physicians (17 [81%] men) were interviewed, including 13 otolaryngologists and 8 radiation oncologists with a median of 8 years (IQR, 5-20 years) in practice. Twelve participants (57%) stated their practice comprised more than 75% of patients with HNC. Participants expressed that there was substantial variation in the interpretation of the surveillance guidelines. Participants were open to the potential for deintensification of surveillance or incorporating symptom-based surveillance protocols but had concerns that deintensification may increase patient anxiety and shift some of the burden of recurrence monitoring to patients. Patient and physician peace of mind, the importance of maintaining the patient-physician relationship, and the need for adequate survivorship and management of treatment-associated toxic effects were reported to be important barriers to deintensifying surveillance., Conclusions and Relevance: In this qualitative study, clinicians revealed a willingness to consider altering cancer surveillance but expressed a need to maintain patient and clinician peace of mind, maintain the patient-clinician relationship, and ensure adequate monitoring of treatment-associated toxic effects and other survivorship concerns. These findings may be useful in future research on the management of posttreatment surveillance.

Purpose: We developed and tested a multi-level intervention, ConnectedCancerCare (CCC), which includes a tailored website and appointment reminder system for women with early-stage breast cancer and a provider summary letter sent to their medical oncologist and primary care provider to improve the delivery of team-based survivorship care., Methods: We conducted a pilot randomized controlled trial to establish the feasibility and acceptability of CCC. Women diagnosed with stages 0-II breast cancer within one year of completing primary treatment were randomized to CCC (intervention) or a static online survivorship care plan (control). Participants completed baseline and 3-month follow-up surveys online. Post-trial interviews with 5 PCPs, 6 oncology providers, and 8 intervention patients were conducted., Results: Of the 160 eligible women invited to participate, 66 completed the baseline survey and were randomized (41%) and 54 completed a follow-up survey (83%). Participants in the intervention arm found the CCC content to be acceptable, with 82% reporting it was easy to use and 86% reporting they would recommend it to other patients. Women randomized to CCC (vs. control) more often reported scheduling a PCP follow-up visit (64% vs. 42%), communicating with their PCP about provider roles (67% vs. 18%), and higher mean team-based cancer care knowledge scores (3.7 vs. 3.4)., Conclusion: Deploying CCC in medical oncology practices was feasible, and the intervention content was acceptable. CCC shows promise for improving patient knowledge and patient-provider communication about provider roles in team-based cancer care and encouraging patients to engage with their PCP early in the survivorship period., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Objective: To evaluate the association between post-diagnosis continuity of care and receipt of aggressive end of life care among women dying of ovarian cancer., Methods: This retrospective claims analysis included 6680 Medicare beneficiaries over age 66 with ovarian cancer who survived at least one year after diagnosis, had at least 4 outpatient evaluation and management visits and died between 2000 and 2016. We calculated the Bice-Boxerman Continuity of Care Index (COC) for each woman, and split COC into tertiles (high, medium, low). We compared late or no hospice use, >1 emergency department (ED) visit, intensive care unit (ICU) admission, >1 hospitalization, terminal hospitalization, chemotherapy, and invasive and/or life extending procedures among women with high or medium vs. low COC using multivariable adjusted logistic regression., Results: In this sample, 49.8% of women received aggressive care in the last month of life. Compared to women with low COC, women with high COC had 66% higher odds of chemotherapy (adjusted OR 1.66 CI 1.23-2.24) in the last two weeks of life. Women with high COC also had 16% greater odds of not enrolling in hospice compared to women with low COC (adjusted OR 1.16 CI 1.01-1.33). COC was not associated with late enrollment in hospice, hospital utilization, or aggressive procedures., Conclusions: COC at the end of life is complicated and may pose unique challenges in providing quality end of life care. Future work exploring the specific facets of continuity associated with quality end of life care is needed., Competing Interests: Declaration of Competing Interest MAM, LPW, SU, MLC and JJR and PC report no conflict of interest., (Copyright © 2021 Elsevier Inc. All rights reserved.)

Background: The clinical landscape has moved toward less aggressive end-of-life care for women with ovarian cancer. However, whether there has been a decline in the use of aggressive end-of-life services is unknown. The authors evaluated current national trends and racial disparities in end-of-life care among women with ovarian cancer using the Surveillance, Epidemiology, and End Results-Medicare-linked data set., Methods: In total, 7756 Medicare beneficiaries aged >66 years with ovarian cancer who died between 2007 and 2016 were identified. The authors examined trends and racial disparities in late hospice or no hospice use, >1 emergency department (ED) visit, intensive care unit admission, >1 hospitalization, terminal hospitalization, chemotherapy, and invasive and/or life-extending procedures using multivariable logistic regression., Results: The median hospice length of stay did not change over time; however, women were increasingly admitted to the intensive care unit and had multiple ED visits in the last month of life (P < .001). Not enrolling in hospice at the end of life and terminal hospitalizations decreased over time (P < .001). Non-White women were more likely to receive aggressive end-of-life care, particularly for hospital-related utilization and life-extending procedures, whereas non-Hispanic Black women were more likely to have >1 ED visit (odds ratio, 2.04; 95% CI, 1.57-2.64) or life-extending procedures (odds ratio, 1.89; 95% CI, 1.45-2.48) compared with non-Hispanic White women., Conclusions: Despite clinical guidelines and increasing emphasis on reducing aggressive end-of-life care, the use of aggressive end-of-life care for women with ovarian cancer persists, and care is most aggressive for non-White women., (© 2021 American Cancer Society.)

Introduction: Primary care providers can collaborate with urologists to ensure men with low risk prostate cancer on active surveillance receive followup testing and adhere to the management strategy, yet primary care provider attitudes about active surveillance and their roles remain unknown., Methods: We surveyed 1,000 primary care providers (347/741 eligible primary care providers responded). We assessed primary care provider support for and beliefs about active surveillance, and attitudes about and preferences for their role in various aspects of low risk prostate cancer management. We then examined associations between 1) primary care provider support for and primary care provider beliefs about active surveillance; and 2) primary care provider attitudes and preferences for their role., Results: Nearly 50% of primary care providers strongly supported active surveillance for all low risk men, and 81% strongly agreed that active surveillance allows men to avoid side effects, while 57% strongly agreed it caused worry. Primary care providers who strongly supported active surveillance were less likely to strongly agree that active surveillance contributes to worry (50.3% vs 63.7% respectively, p=0.01). Half of the primary care providers strongly agreed that primary care providers can provide cancer-related care (50.5%), and the majority preferred a shared care model to ordering prostate specific antigen tests (60.1%). Primary care providers who strongly agreed that primary care providers can provide cancer-related care were more likely to prefer a primary care provider-led (79.3% vs 20.7%) or shared care (53.9% vs 46.1%) model vs urologist-led for ordering prostate specific antigen tests (p <0.01)., Conclusions: While many primary care providers supported active surveillance for low risk prostate cancer, primary care providers still had concerns with it as the primary management strategy. Understanding primary care providers perspectives on low risk prostate cancer management can inform strategies to improve high quality active surveillance care., (© 2021 by American Urological Association Education and Research, Inc.)

Context: Thyroid cancer is the second most common cancer in Hispanic women., Objective: To determine the relationship between acculturation level and unmet information needs among Hispanic women with thyroid cancer., Design: Population-based survey study., Participants: Hispanic women from Los Angeles Surveillance Epidemiology and End Results registry with thyroid cancer diagnosed in 2014-2015 who had previously completed our thyroid cancer survey in 2017-2018 (N = 273; 80% response rate)., Main Outcome Measures: Patients were asked about 3 outcome measures of unmet information needs: (1) internet access, (2) thyroid cancer information resources used, and (3) ability to access information. Acculturation was assessed with the Short Acculturation Scale for Hispanics (SASH). Health literacy was measured with a validated single-item question., Results: Participants' median age at diagnosis was 47 years (range 20-79) and 48.7% were low-acculturated. Hispanic women were more likely to report the ability to access information "all of the time" if they preferred thyroid cancer information in mostly English compared to mostly Spanish (88.5% vs 37.0%, P < 0.001). Low-acculturated (vs high-acculturated) Hispanic women were more likely to have low health literacy (47.2% vs 5.0%, P < 0.001) and report use of in-person support groups (42.0% vs 23.1%, P = 0.006). Depending on their level of acculturation, Hispanic women accessed the internet differently (P < 0.001) such that low-acculturated women were more likely to report use of only a smartphone (34.0% vs 14.3%) or no internet access (26.2% vs 1.4%)., Conclusions: Low-acculturated (vs high-acculturated) Hispanic women with thyroid cancer have greater unmet information needs, emphasizing the importance of patient-focused approaches to providing medical information., (© The Author(s) 2021. Published by Oxford University Press on behalf of the Endocrine Society. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Context: The use of radioactive iodine (RAI) for low-risk thyroid cancer is common, and variation in its use exists, despite the lack of benefit for low-risk disease and potential harms and costs., Objective: To simultaneously assess patient- and physician-level factors associated with patient-reported receipt of RAI for low-risk thyroid cancer., Methods: This population-based survey study of patients with newly diagnosed differentiated thyroid cancer identified via the Surveillance Epidemiology and End Results (SEER) registries of Georgia and Los Angeles County included 989 patients with low-risk thyroid cancer, linked to 345 of their treating general surgeons, otolaryngologists, and endocrinologists. We assessed the association of physician- and patient-level factors with patient-reported receipt of RAI for low-risk thyroid cancer., Results: Among this sample, 48% of patients reported receiving RAI, and 23% of their physicians reported they would use RAI for low-risk thyroid cancer. Patients were more likely to report receiving RAI if they were treated by a physician who reported they would use RAI for low-risk thyroid cancer compared with those whose physician reported they would not use RAI (adjusted OR: 1.84; 95% CI, 1.29-2.61). The odds of patients reporting they received RAI was 55% lower among patients whose physicians reported they saw a higher volume of patients with thyroid cancer (40+ vs 0-20) (adjusted OR: 0.45; 0.30-0.67)., Conclusions: Physician perspectives and attitudes about using RAI, as well as patient volume, influence RAI use for low-risk thyroid cancer. Efforts to reduce overuse of RAI in low-risk thyroid cancer should include interventions targeted toward physicians, in addition to patients., (© The Author(s) 2021. Published by Oxford University Press on behalf of the Endocrine Society. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: Oncology settings increasingly use patient experience data to evaluate clinical performance. Given that older patients with hematologic malignancies are a high-risk population, this study examined factors associated with patient-reported health care experiences during the first year of their cancer diagnosis., Methods: Cross-sectional study using the 2000-2015 SEER-CAHPS® data to examine patient experiences of Medicare enrollees with a primary diagnosis of leukemia or lymphoma. The primary outcomes were three CAHPS assessments: overall care, personal doctor, and health plan overall. We estimated case-mix adjusted and fully adjusted associations between factors (i.e., clinical and sociodemographic) and the CAHPS outcomes using bivariate statistical tests and multiple linear regression., Results: The final sample included 1,151 patients, with 431 diagnosed with leukemia and 720 diagnosed with lymphoma (median time from diagnosis to survey 6 months). Patients who completed the survey further apart from the diagnosis date reported significantly higher adjusted ratings of care overall (β .39, p = .008) than those closer to diagnosis. American Indian/Alaska Native, Asian, and Pacific Islander patients had lower adjusted ratings of care overall (β - .73, p = .003) than Non-Hispanic white patients. Multimorbidity was significantly associated with higher adjusted personal doctor ratings (β .26, p = .003)., Conclusions: Unfavorable patient experiences among older adults diagnosed with hematologic malignancies warrant targeted efforts to measure and improve care quality. Future measurement of experiences of cancer care soon after diagnosis, coupled with careful sampling of high-priority populations, will inform oncology leaders and clinicians on strategies to improve care for high-risk, high-cost populations.

Objectives: This study examined the association of ED use in the first year of diagnosis and patient experiences in care among older adults with hematologic malignancies., Materials and Methods: Cross-sectional design using SEER-CAHPS® data from 2002 to 2015 to study Medicare fee-for-service enrollees with a primary diagnosis of leukemia or lymphoma. We linked the CAHPS survey data (patient-reported experiences with health services) to patients' cancer registry information and Medicare outpatient claims from the SEER-CAHPS resource. We estimated associations of ED use and clinical characteristics with two CAHPS outcomes - "getting care quickly" (timeliness) and "getting needed care" (access) - with bivariate and multivariate analyses., Results: The analytic sample included 751 patients, 125 of whom had an ED claim in the first year of cancer diagnosis. The most frequent ED diagnosis clusters were fever and infection (n = 17, 13.6%), orthopedic and injury (16, 12.8%) and pain (16, 12.8%). Significantly more enrollees with an ED claim were diagnosed with lymphoma (p < 0.01), lived in rural areas (p < 0.01), and lived in areas with many families living in poverty (p < 0.01). In adjusted models, enrollees with an ED claim reported significantly worse access to care (β - 4.83; 95%CI -9.29,-0.38; p = 0.03)., Conclusion: The management of urgent care concerns for adults with hematologic malignancies remains an important clinical and quality improvement imperative. Further study is warranted to enhance the management of emergent complications in older adults receiving care for hematologic malignancies, with efforts that enhance coordination of ambulatory oncology care., Competing Interests: Declaration of Competing Interest None., (Copyright © 2020 Elsevier Ltd. All rights reserved.)

Background: Primary care provider's (PCP) role in cancer care is expanding and may include supporting patients in their treatment decisions. However, the degree to which PCPs engage in this role for low-risk prostate cancer is unknown., Objective: Characterize PCP perceptions regarding their role in low-risk prostate cancer treatment decision-making., Design: Cross-sectional, national survey., Main Measures: For men with low-risk prostate cancer, PCP reports of (1) confidence in treatment decision-making (high vs. low); (2) intended participation in key aspects of active surveillance treatment decision-making (more vs. less)., Key Results: A total of 347 from 741 eligible PCPs responded (adjusted response rate 56%). Half of respondent PCPs (50.3%) reported high confidence about engaging in low-risk prostate cancer treatment decision-making. The odds of PCPs reporting high confidence were greater among those in solo practice (vs working with > 1 PCP) (OR 2.18; 95% CI 1.14-4.17) and with higher volume of prostate cancer patients (> 15 vs. 6-10 in past year) (OR 2.16; 95% CI 1.02-4.61). PCP report of their intended participation in key aspects of active surveillance treatment decision-making varied: discussing worry (62.4%), reviewing benefits (48.5%) and risks (41.8%), and reviewing all treatment options (34.2%). PCPs who reported high confidence had increased odds of more participation in all aspects of active surveillance decision-making: reviewing all treatment options (OR 3.11; 95% CI 1.82-5.32), discussing worry (OR 2.12; 95% CI 1.28-3.51), and reviewing benefits (OR 3.13; 95% CI 1.89-5.16) and risks (OR 3.20; 95% CI 1.91-5.36)., Conclusions: The majority of PCPs were confident about engaging with patients in low-risk prostate cancer treatment decision-making, though their intended participation varied widely across four key aspects of active surveillance care. With active surveillance being considered for other low-risk cancers (such as breast and thyroid), understanding factors influencing PCP involvement will be instrumental to supporting team-based cancer care.

Context: While prior research has examined how primary care providers (PCPs) can care for breast and colon cancer survivors, little is known about their role in thyroid cancer survivorship., Objective: To understand PCP involvement and confidence in thyroid cancer survivorship care., Design/setting/participants: We surveyed PCPs identified by thyroid cancer patients from the Georgia and LA SEER registries (n = 162, response rate 56%). PCPs reported their involvement in long-term surveillance and confidence in handling survivorship care (role of random thyroglobulin levels and neck ultrasound, and when to end long-term surveillance and refer back to the specialist). We examined: 1) PCP-reported factors associated with involvement using multivariable analyses; and 2) bivariate associations between involvement and confidence in handling survivorship care., Main Outcome Measures: PCP involvement (involved vs not involved) and confidence (high vs low)., Results: Many PCPs (76%) reported being involved in long-term surveillance. Involvement was greater among PCPs who noted clinical guidelines as the most influential source in guiding treatment (OR 4.29; 95% CI, 1.56-11.82). PCPs reporting high confidence in handling survivorship varied by aspects of care: refer patient to specialist (39%), role of neck ultrasound (36%) and random thyroglobulin levels (27%), and end long-term surveillance (14%). PCPs reporting involvement were more likely to report high confidence in discussing the role of random thyroglobulin levels (33.3% vs 7.9% not involved; P < 0.01)., Conclusions: While PCPs reported being involved in long-term surveillance, gaps remain in their confidence in handling survivorship care. Thyroid cancer survivorship guidelines that delineate PCP roles present one opportunity to increase confidence about their participation., (© Endocrine Society 2020. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: To the authors' knowledge, studies regarding risk perception among survivors of thyroid cancer are scarce., Methods: The authors surveyed patients who were diagnosed with differentiated thyroid cancer from the Surveillance, Epidemiology, and End Results registries of Georgia and Los Angeles County (2632 patients; 63% response rate). The analytic cohort was defined by a ≤5% risk of disease recurrence and mortality (1597 patients). Patients estimated their recurrence and mortality risks separately (increments of 10% and endpoints of ≤5% and ≥95%). Both outcomes were dichotomized between reasonably accurate estimates (risk perception of ≤5% or 10%) versus overestimation (risk perception of ≥20%). Multivariable logistic regression was used to identify factors associated with risk overestimation, and the relationships between overestimation and both worry and quality of life were evaluated., Results: In the current study sample, 24.7% of patients overestimated their recurrence risk and 12.5% overestimated their mortality risk. A lower educational level was associated with overestimating disease recurrence (≤high school diploma: odds ratio [OR], 1.64 [95% CI, 1.16-2.31]; and some college: OR, 1.36 [95% CI, 1.02-1.81]) and mortality (≤high school diploma: OR, 1.86 [95% CI, 1.18-2.93]) risk compared with those attaining at least a college degree. Hispanic ethnicity was found to be associated with overestimating recurrence risk (OR, 1.44, 95% CI 1.02-2.03) compared with their white counterparts. Worry about recurrence and death was found to be greater among patients who overestimated versus those who had a reasonably accurate estimate of their risk of disease recurrence and mortality, respectively (P < .001). Patients who overestimated mortality risk also reported a decreased physical quality of life (mean T score, 43.1; 95% CI, 41.6-44.7) compared with the general population., Conclusions: Less educated patients and Hispanic patients were more likely to report inaccurate risk perceptions, which were associated with worry and a decreased quality of life., (© 2019 American Cancer Society.)

Context: Cancer-related fatigue (CRF) is one of the most common symptoms experienced by cancer patients after hematopoietic cell transplantation (HCT). Yoga is an approach with supportive evidence to improve CRF in different cancer populations, but to our knowledge, it has not been tested in an adult HCT population., Objectives: The aim of this study was to evaluate the feasibility of a yoga intervention offered to adult HCT survivors with moderate-to-severe CRF., Methods: This feasibility study used a single-arm, pretest-posttest design. Adult HCT survivors were enrolled in a six-week restorative yoga intervention that consisted of a one-hour once-weekly class with twice-weekly home practice using a DVD., Results: Twenty participants (13 women and seven men) enrolled in this study with a mean age of 51 years (SD = 12.5). The sample consisted of 19 allogeneic HCT survivors, seven of whom had a history of acute graft-vs.-host disease (GVHD), six with active, extensive chronic GVHD, and one autologous HCT survivor. The accrual acceptance rate was 23.2% (20/86 HCT survivors) and retention rate was 60% (12/20). Overall adherence was 45.4%. No adverse events were reported., Conclusion: The results of this study suggest that a restorative yoga intervention in adult HCT survivors is safe and feasible. The incidence of GVHD may have impacted adherence. Strategies to improve accrual acceptance, retention, and adherence are needed., (Copyright © 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Gabapentinoid use for long-term cancer pain control may be problematic, given unclear mechanisms of action and increased concerns for physical dependence. The purpose of this report is to examine trends of gabapentinoid use among US adults with cancer from 2005 to 2015., Methods: We conducted a serial, cross-sectional study using data from the Medical Expenditure Panel Survey (MEPS). We performed multiple logistic regression to examine the annual percentages of gabapentinoid users, which were adjusted for age, sex, and US region of residence. The amount of gabapentinoid prescriptions filled in 2015 was also estimated., Results: The adjusted percentage of gabapentinoid users in 2015 was 5.60% (3.79%, 7.41%), 2.39 times greater than the percentage in 2005 (p < .001). By 2015, the number of gabapentinoid prescriptions had grown to approximately 3.52 million (2.40 million, 4.65 million)., Conclusion: We observed greater than a twofold increase in the trend of gabapentinoid medication use among US adults with cancer. Investigations on the long-term efficacy of gabapentinoids for complex pain syndromes, and mitigation of risks, is essential to guide informed clinical management and keep patients safe.

Purpose: To understand the effect of patient preferences on thyroid cancer surveillance intensity., Patients and Methods: Eligible patients diagnosed with thyroid cancer between January 1, 2014, and December 31, 2015, from the Georgia and Los Angeles County SEER registries were surveyed between February 2017 and October 2018 (N = 2,632; response rate, 63%). Patient reports on health care utilization in the past year and responses to the validated Medical Maximizer-Minimizer Scale were linked to SEER data in the 2,183 disease-free patients. Ordered logistic regression was performed using a cumulative logit with nonproportional odds., Results: Of disease-free patients, 31.6% were classified as minimizers, 42.5% as moderate maximizers, and 25.9% as strong maximizers. In the past year, 25.2%, 27.3%, and 38.5% of minimizers, moderate maximizers, and strong maximizers, respectively, had ≥ 4 doctor visits, and 18.3%, 24.9%, and 29.5%, respectively, had ≥ 2 neck ultrasounds. When controlling for age, sex, race and ethnicity, comorbidity, stage, and SEER site, strong maximizers (compared with minimizers) were significantly more likely to report ≥ 4 doctor visits (odds ratio [OR], 1.45; 95% CI, 1.10-1.92), ≥ 2 neck ultrasounds (OR, 1.58; 95% CI, 1.17-2.14), ≥ 1 radioactive iodine scan (OR, 1.73; 95% CI, 1.19-2.50), and ≥ 1 additional imaging study (OR, 2.06; 95% CI, 1.56-2.72)., Conclusion: Among patients with thyroid cancer who have been declared disease free, preference for a more maximal versus minimal approach to medical care is associated with increased number of physician visits and imaging tests. Because increased surveillance does not clearly correlate with improved outcomes, poses potential risks to patients, and contributes to increased healthcare costs, stronger consideration of the role of patient preferences is necessary when framing discussions on surveillance.

Purpose: For many patients with differentiated thyroid cancer, use of radioactive iodine (RAI) does not improve survival or reduce recurrence risk. Yet there is wide variation in RAI use, emphasizing the importance of understanding patient perspectives regarding RAI decision making., Patients and Methods: All eligible patients diagnosed with thyroid cancer from 2014 to 2015 from the Georgia and Los Angeles SEER registries were surveyed (N = 2,632; response rate, 63%). Patients in whom selective RAI use is recommended were included in this analysis (n = 1,319). Patients were asked whether they felt like they had a choice to receive RAI (yes or no), how strongly their physician recommended RAI (5-point Likert-type scale), whether they received RAI (yes or no), and how satisfied they were with their RAI decision (more [score of 4 or greater] v less). Multivariable, weighted logistic regression with multiple imputation was used to assess the associations between patient characteristics and perception of no RAI choice and between perception of no RAI choice with receipt of RAI and decision satisfaction., Results: More than half of respondents (55.8%) perceived they did not have an RAI choice, and the majority of patients (75.9%) received RAI. The odds of perceiving no RAI choice was greater among those whose physician strongly recommended RAI (adjusted odds ratio [OR], 1.56; 95% CI, 1.13 to 2.17). Patients who perceived they did not have an RAI choice were more likely to receive RAI (adjusted OR, 2.50; 95% CI, 1.64 to 3.82) and report lower decision satisfaction (adjusted OR, 2.31; 95% CI, 1.67 to 3.20)., Conclusion: Many patients did not feel they had a choice about whether to receive RAI. Patients who perceived they did not have a choice were more likely to receive RAI and report lower decision satisfaction, suggesting a need for more shared decision making to reduce overtreatment.

Background: Treatment decisions for patients with early-stage breast cancer often involve discussions with multiple oncology providers. However, the extent to which primary care providers (PCPs) are involved in initial treatment decisions remains unknown., Methods: A stratified random sample of PCPs identified by newly diagnosed patients with early-stage breast cancer from the Georgia and Los Angeles Surveillance, Epidemiology, and End Results registries were surveyed (n = 517; a 61% response rate). PCPs were asked how frequently they discussed surgery, radiation, and chemotherapy options with patients; how comfortable they were with these discussions; whether they had the necessary knowledge to participate in decision making; and what their confidence was in their ability to help (on 5-item Likert-type scales). Multivariate logistic regression was used to identify PCP-reported attitudes associated with more PCP participation in each treatment decision., Results: In this sample, 34% of PCPs reported that they discussed surgery, 23% discussed radiation, and 22% discussed chemotherapy options with their patients. Of those who reported more involvement in surgical decisions, 22% reported that they were not comfortable having a discussion, and 17% did not feel that they had the necessary knowledge to participate in treatment decision making. PCPs who positively appraised their ability to participate were more likely to participate in all 3 decisions (odds ratio [OR] for surgery, 6.01; 95% confidence interval [CI], 4.16-8.68; OR for radiation, 8.37; 95% CI, 5.16-13.58; OR for chemotherapy, 6.56; 95% CI, 4.23-10.17)., Conclusions: A third of PCPs reported participating in breast cancer treatment decisions, yet gaps in their knowledge about decision making and in their confidence in their ability to help exist. Efforts to increase PCPs' knowledge about breast cancer treatment options may be warranted., (© 2019 American Cancer Society.)

Background: Patients with breast cancer involve multiple decision support persons (DSPs) in treatment decision making, yet little is known about DSP engagement in decision making and its association with patient appraisal of the decision process., Methods: Patients newly diagnosed with breast cancer reported to Georgia and Los Angeles Surveillance, Epidemiology, and End Results registries in 2014-2015 were surveyed 7 months after their diagnosis. The individual most involved in each respondent's decision making (the key DSP) was surveyed. DSP engagement was measured across 3 domains: 1) informed about decisions, 2) involved in decisions, and 3) aware of patient preferences. Patient decision appraisal included subjective decision quality (SDQ) and deliberation. This study evaluated bivariate associations with chi-square tests between domains of DSP engagement and independent DSP variables. Analysis of variance and multivariable logistic regression were used to compare domains of DSP engagement with patient decision appraisal., Results: In all, 2502 patients (68% response rate) and 1203 eligible DSPs (70% response rate) responded. Most DSPs were husbands/partners or daughters, were white, and were college graduates. Husbands/partners were more likely to be more informed, involved, and aware (all P values < .01). English- and Spanish-speaking Latinos had a higher extent of (P = .02) but lower satisfaction with involvement (P < .01). A highly informed DSP was associated with higher odds of patient-reported SDQ (odds ratio, 1.46; 95% confidence interval, 1.03-2.08; P = .03). A highly aware DSP was associated with higher odds of patient-reported deliberation (odds ratio, 1.83; 95% confidence interval, 1.36-2.47; P < .01)., Conclusions: In this population-based study, informal DSPs were engaged with and positively contributed to patients' treatment decision making. To improve decision quality, future interventions should incorporate DSPs., (© 2019 American Cancer Society.)

Purpose: Patients report strong preferences regarding which provider-oncologist or primary care provider (PCP)-handles their primary care after initial cancer treatment (eg, other cancer screenings, preventive care, comorbidity management). Little is known about associations between provider involvement during initial cancer treatment and patient preferences for provider roles after initial treatment., Methods: Women who received a diagnosis of early-stage breast cancer in 2014 to 2015 were identified from the Georgia and Los Angeles County SEER registries and surveyed (N = 2,502; 68% response rate). Women reported the level of their providers' involvement in their care during initial cancer treatment. Associations between level of medical oncologist's participation and PCP's engagement during initial cancer treatment and patient preferences for oncologist led ( v PCP led) other cancer screenings after initial treatment were examined using multivariable logistic regression models., Results: During their initial cancer treatment, 20% of women reported medical oncologists participated substantially in delivering primary care and 66% reported PCPs were highly engaged in their cancer care. Two-thirds (66%) of women preferred medical oncologists to handle other cancer screenings after initial treatment. Women who reported substantial medical oncologist participation in primary care were more likely (adjusted odds ratio, 1.42; 95% CI, 1.05 to 1.91) and those who reported high PCP engagement in cancer care were less likely (adjusted odds ratio, 0.41; 95% CI, 0.31 to 0.53) to prefer oncologist-led other cancer screenings after initial treatment., Conclusions: Providers' involvement during initial cancer treatment may affect patient preferences regarding provision of follow-up primary care. Clarifying provider roles as early as during cancer treatment may help to better delineate their roles throughout survivorship.

Background: Little is known regarding whether growing awareness of the financial toxicity of a cancer diagnosis and its treatment has increased clinician engagement or changed the needs of current patients., Methods: The authors surveyed patients with early-stage breast cancer who were identified through population-based sampling from 2 Surveillance, Epidemiology, and End Results (SEER) regions and their physicians. The authors described responses from approximately 73% of surgeons (370 surgeons), 61% of medical oncologists (306 medical oncologists), 67% of radiation oncologists (169 radiation oncologists), and 68% of patients (2502 patients)., Results: Approximately one-half (50.9%) of responding medical oncologists reported that someone in their practice often or always discusses financial burden with patients, as did 15.6% of surgeons and 43.2% of radiation oncologists. Patients indicated that financial toxicity remains common: 21.5% of white patients and 22.5% of Asian patients had to cut down spending on food, as did 45.2% of black and 35.8% of Latina patients. Many patients desired to talk to providers about the financial impact of cancer (15.2% of whites, 31.1% of blacks, 30.3% of Latinas, and 25.4% of Asians). Unmet patient needs for engagement with physicians about financial concerns were common. Of 945 women who worried about finances, 679 (72.8%) indicated that physicians and their staff did not help. Of 523 women who desired to talk to providers regarding the impact of breast cancer on employment or finances, 283 (55.4%) reported no relevant discussion., Conclusions: Many patients report inadequate clinician engagement in the management of financial toxicity, even though many providers believe that they make services available. Clinician assessment and communication regarding financial toxicity must improve; cure at the cost of financial ruin is unacceptable. Cancer 2018;000:000-000. © 2018 American Cancer Society., (© 2018 American Cancer Society.)

Objective: To compare the risk of mortality among men treated for benign prostatic hyperplasia (BPH) with 5 alpha-reductase inhibitors (5ARI) to those treated with alpha-blockers (AB) in community practice settings., Methods: We employed a retrospective matched cohort study in 4 regions of an integrated healthcare system. Men aged 50 years and older who initiated pharmaceutical treatment for BPH and/or lower urinary tract symptoms between 1992 and 2008 and had at least 3 consecutive prescriptions that were eligible and followed through 2010 (N = 174,895). Adjusted hazard ratios were used to estimate the risk of mortality due to all-causes associated with 5ARI use (with or without concomitant ABs) as compared to AB use., Results: In this large and diverse sample with 543,523 person-years of follow-up, 35,266 men died during the study period, 18.9% of the 5ARI users and 20.4% of the AB users. After adjustment for age, medication initiation year, race, region, prior AB history, Charlson score, and comorbidities, 5ARI use was not associated with an increased risk of mortality when compared to AB use (Adjusted hazard ratios: 0.64, 95% confidence interval: 0.62, 0.66)., Conclusion: Among men receiving medications for BPH in community practice settings, 5ARI use was not associated with an increased risk of mortality when compared to AB use. These data provide reassurance about the safety of using 5ARIs in general practice to manage BPH and/or lower urinary tract symptoms., (Copyright © 2018 Elsevier Inc. All rights reserved.)

Background: The omission of radiotherapy (RT) after lumpectomy is a reasonable option for many older women with favorable-prognosis breast cancer. In the current study, we sought to evaluate patient perspectives regarding decision making about RT., Methods: Women aged 65 to 79 years with AJCC 7th edition stage I and II breast cancer who were reported to the Georgia and Los Angeles County Surveillance, Epidemiology, and End Results registries were surveyed (response rate, 70%) regarding RT decisions, the rationale for omitting RT, decision-making values, and understanding of disease recurrence risk. We also surveyed their corresponding surgeons (response rate, 77%). Patient characteristics associated with the omission of RT were evaluated using multilevel, multivariable logistic regression, accounting for patient clustering within surgeons., Results: Of 999 patients, 135 omitted RT (14%). Older age, lower tumor grade, and having estrogen receptor-positive disease each were found to be strongly associated with omission of RT in multivariable analyses, whereas the number of comorbidities was not. Non-English speakers were more likely to omit RT (adjusted odds ratio, 5.9; 95% confidence interval, 1.4-24.5). The most commonly reported reasons for RT omission were that a physician advised the patient that it was not needed (54% of patients who omitted RT) and patient choice (41%). Risk of local disease recurrence was overestimated by all patients: by approximately 2-fold among those who omitted RT and by approximately 8-fold among those who received RT. The risk of distant disease recurrence was overestimated by approximately 3-fold on average., Conclusions: To some extent, decisions regarding RT omission are appropriately influenced by patient age, tumor grade, and estrogen receptor status, but do not appear to be optimally tailored according to competing comorbidities. Many women who are candidates for RT omission overestimate their risk of disease recurrence. Cancer 2018;124:2714-2723. © 2018 American Cancer Society., (© 2018 American Cancer Society.)

Purpose Little is known about the extent to which genetic counseling is integrated into community practices for patients newly diagnosed with breast cancer. We examined the receipt of clinically indicated genetic counseling in these patients. Patients and Methods We surveyed 5,080 patients between the ages of 20 and 79 years, diagnosed from July 2013 to August 2015 with early-stage breast cancer and reported to the SEER registries of Georgia and Los Angeles County. Surveys were linked to SEER clinical data and genetic test results. The study sample (N = 1,711) comprised patients with indications for formal genetic risk evaluation. Results Overall, 47.4% did not get tested, 40.7% tested negative, 7.4% had a variant of uncertain significance only, and 4.5% had a pathogenic mutation. Three quarters (74.6%) received some form of genetic counseling (43.5%, formal counseling and 31.1%, physician-directed discussion). Virtually all tested patients (96.1%) reported some form of genetic discussion (62.2%, formal counseling and 33.9%, physician-directed discussion). However, only one half (50.6%) of those not tested received any discussion about genetics. Younger women were more likely to report some type of counseling, controlling for other factors: odds ratio, 4.5 (95% CI, 2.6 to 8.0); 1.9 (95% CI, 1.1 to 3.3); and 1.5 (95% CI, 1.0 to 2.3) for women younger than 50 years of age, 50 to 59 years of age, and 60 to 69 years of age versus those 70 years of age and older. Patients' assessments of the amount of information they received about whether to get tested were similarly high whether they were counseled by a genetics expert or by a physician only (80.8% v 79.4% stated information was just right, P = .59). Conclusion Less than one half (43.5%) of patients with clinical indications received formal genetic counseling. There is a large gap between mandates for timely pretest formal genetic counseling in higher-risk patients and the reality of practice today.