Patient and physician decision-making dynamics in overactive bladder care: A mixed methods study.

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.

Physicians' Hierarchy of Tumor Biomarkers for Optimizing Chemotherapy in Breast Cancer Care.

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.

"Clinical trials are space travel": Factors of psychological response to recurrence among oncologists enrolling patients in treatment optimization trials.

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.

Barriers, facilitators, and recommendations for sexual orientation and gender identity data collection in community oncology practices.

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.

Patient Cognitive Status and Physician Recommendations for Cardiovascular Disease Treatment: Results of Two Nationwide, Randomized Survey Studies.

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.

Predicting Incident Adenocarcinoma of the Esophagus or Gastric Cardia Using Machine Learning of Electronic Health Records.

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.

Primary care provider attitudes about and tendency to use non-recommended surveillance tests after curative breast cancer treatment.

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.

Trends in hospice referral timing and location among individuals dying of ovarian cancer: persistence of missed opportunities.

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.

Validation of Self-Reported Cancer Diagnoses by Respondent Cognitive Status in the U.S. Health and Retirement Study.

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.

Oncologist-Reported Barriers and Facilitators to Enrolling Patients in Optimization Trials That Test Less Intense Cancer Treatment.

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.

Physician Perspectives on Reducing Curative Cancer Treatment Intensity for Populations Underrepresented in Clinical Trials.

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 Influence of Medical Comorbidities on Survival Disparities in a Multiethnic Group of Patients with De Novo Metastatic Breast Cancer.

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.

Exploring Variation in the Receipt of Recommended Active Surveillance for Men with Favorable-Risk Prostate Cancer.

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.

New directions in cancer and aging: State of the science and recommendations to improve the quality of evidence on the intersection of aging with cancer control.

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.

Assessing the Impact of Decision Aid Use on Post Prostatectomy Patient Reported Outcomes.

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.

What patients with eosinophilic esophagitis may not share with their providers: a qualitative assessment of online health communities.

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.

Clinician Attitudes and Beliefs About Deintensifying Head and Neck Cancer Surveillance.

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.

Validation of Self-reported Cancer Diagnoses Using Medicare Diagnostic Claims in the US Health and Retirement Study, 2000-2016.

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.