Effect of a Decision Aid on Agreement Between Patient Preferences and Repair Type for Abdominal Aortic Aneurysm: A Randomized Clinical Trial.

Importance: Patients with abdominal aortic aneurysm (AAA) can choose open repair or endovascular repair (EVAR). While EVAR is less invasive, it requires lifelong surveillance and more frequent aneurysm-related reinterventions than open repair. A decision aid may help patients receive their preferred type of AAA repair. Objective: To determine the effect of a decision aid on agreement between patient preference for AAA repair type and the repair type they receive. Design, Setting, and Participants: In this cluster randomized trial, 235 patients were randomized at 22 VA vascular surgery clinics. All patients had AAAs greater than 5.0 cm in diameter and were candidates for both open repair and EVAR. Data were collected from August 2017 to December 2020, and data were analyzed from December 2020 to June 2021. Interventions: Presurgical consultation using a decision aid vs usual care. Main Outcomes and Measures: The primary outcome was the proportion of patients who had agreement between their preference and their repair type, measured using χ2 analyses, κ statistics, and adjusted odds ratios. Results: Of 235 included patients, 234 (99.6%) were male, and the mean (SD) age was 73 (5.9) years. A total of 126 patients were enrolled in the decision aid group, and 109 were enrolled in the control group. Within 2 years after enrollment, 192 (81.7%) underwent repair. Patients were similar between the decision aid and control groups by age, sex, aneurysm size, iliac artery involvement, and Charlson Comorbidity Index score. Patients preferred EVAR over open repair in both groups (96 of 122 [79%] in the decision aid group; 81 of 106 [76%] in the control group; P = .60). Patients in the decision aid group were more likely to receive their preferred repair type than patients in the control group (95% agreement [93 of 98] vs 86% agreement [81 of 94]; P = .03), and κ statistics were higher in the decision aid group (κ = 0.78; 95% CI, 0.60-0.95) compared with the control group (κ = 0.53; 95% CI, 0.32-0.74). Adjusted models confirmed this association (odds ratio of agreement in the decision aid group relative to control group, 2.93; 95% CI, 1.10-7.70). Conclusions and Relevance: Patients exposed to a decision aid were more likely to receive their preferred AAA repair type, suggesting that decision aids can help better align patient preferences and treatments in major cardiovascular procedures. Trial Registration: ClinicalTrials.gov Identifier: NCT03115346.

Factors associated with preference of choice of aortic aneurysm repair in the PReference for Open Versus Endovascular repair of AAA (PROVE-AAA) study.

OBJECTIVE: Patients can choose between open repair and endovascular repair (EVAR) of abdominal aortic aneurysm (AAA). However, the factors associated with patient preference for one repair type over another are not well-characterized. Here we assess the factors associated with preference of choice for open or endovascular AAA repair among veterans exposed to a decision aid to help with choosing surgical treatment. METHODS: Across 12 Veterans Affairs hospitals, veterans received a decision aid covering domains including patient information sources and understanding preference. Veterans were then given a series of surveys at different timepoints examining their preferences for open versus endovascular AAA repair. Questions from the preference survey were used in analyses of patient preference. Results were analyzed using χ2 tests. A logistic regression analysis was performed to assess factors associated with preference for open repair or preference for EVAR. RESULTS: A total of 126 veterans received a decision aid informing them of their treatment choices, after which 121 completed all preference survey questions; five veterans completed only part of the instruments. Overall, veterans who preferred open repair were typically younger (70 years vs 73 years; P = .02), with similar rates of common comorbidities (coronary disease 16% vs 28%; P = .21), and similar aneurysms compared with those who preferred EVAR (6.0 cm vs 5.7 cm; P = .50). Veterans in both preference categories (28% of veterans preferring EVAR, 48% of veterans preferring open repair) reported taking their doctor's advice as the top box response for the single most important factor influencing their decision. When comparing the tradeoff between less invasive surgery and higher risk of long-term complications, more than one-half of veterans preferring EVAR reported invasiveness as more important compared with approximately 1 in 10 of those preferring open repair (53% vs 12%; P < .001). Shorter recovery was an important factor for the EVAR group (74%) and not important in the open repair group (76%) (P = .5). In multivariable analyses, valuing a short hospital stay (odds ratio, 12.4; 95% confidence interval, 1.13-135.70) and valuing a shorter recovery (odds ratio, 15.72; 95% confidence interval, 1.03-240.20) were associated with a greater odds of preference for EVAR, whereas finding these characteristics not important was associated with a greater odds of preference for open repair. CONCLUSIONS: When faced with the decision of open repair versus EVAR, veterans who valued a shorter hospital stay and a shorter recovery were more likely to prefer EVAR, whereas those more concerned about long-term complications preferred an open repair. Veterans typically value the advice of their surgeon over their own beliefs and preferences. These findings need to be considered by surgeons as they guide their patients to a shared decision.

How Much is Enough? Public Perception of Minimum Surgeon Volumes.

BACKGROUND: A large body of literature supports an association between surgical volumes and outcomes. Research on this subject has resulted in attempts to quantify minimum volume standards for specific surgeries. However, the extent to which the public takes interest in or is able to interpret surgical volume information is not known. METHODS: We designed a 38-question online survey to assess respondents' knowledge and beliefs about minimum surgical volume standards, and other factors influencing choice of surgeon. Participants, recruited through Amazon Mechanical Turk, an online crowdsourcing marketplace, were specifically asked to estimate minimum volume standards for four different operations (hernia repair, knee replacement, mitral valve repair, and Whipple) and to assess the implications of specific surgeon volumes for decision-making in two hypothetical scenarios. RESULTS: Among 2024 participants, 81% attested that surgeons should be subject to minimum volume standards. A small minority (19%) reported having prior knowledge of a link between surgeon volumes and outcomes. Respondents' mean estimates for appropriate minimum annual volumes across four operations were directly correlated with surgical complexity (5 for inguinal hernia repair, 25 for Whipple), while published minimum standards fall with increasing surgical complexity (25 for hernia repair, 5 for Whipple). These findings were validated by participants' stated intentions: 55% would proceed with a hernia repair by a surgeon with annual volume of 25, while 13% would proceed with a Whipple when annual volume was 5. CONCLUSION: The concept of minimum surgical volumes is intuitively important to the lay public. However, the general public's skewed expectations of minimum volume standards demonstrate an inability to interpret surgical volume numbers meaningfully in clinical settings without appropriate context.

Thyroid Cancer Active Surveillance Program Retention and Adherence in Japan.

Importance: Small papillary thyroid cancers are the most common type of thyroid cancer, with the incidence increasing across the world. Active surveillance of appropriate cancers has the potential to reduce harm from overtreatment but is a significant de-escalation from prior practice. Mechanisms that inform the rates of retention and adherence have not been described and need to be understood if broader uptake is to be considered. Objective: To evaluate patient retention, adherence, and experience in the largest and most long-standing thyroid cancer active surveillance program, to our knowledge. Design, Setting, and Participants: A cohort study using convergent design mixed-methods analysis of attendance data, semistructured interviews, and field observation was conducted at Kuma Hospital, Kobe, Japan. Participants included 1179 patients who were enrolled in surveillance between February 1, 2005, and August 31, 2013, and followed up through December 31, 2017. Data analysis was performed from January 25, 2018, through September 30, 2020. Main Outcomes and Measures: Patients were considered adherent if they underwent ultrasonography within at least 13 months of the previous ultrasonographic examination. Patients were considered retained if they continued surveillance with an ultrasonographic examination at least every 2 years, without having had surgery for patient preference or clinical reasons. Results: Of the 1179 patients included in the study, 1037 (88%) were women. The mean (SD) age was 56 (13.5) years (median, 57 years). Patients were followed up for up to 12.76 years (median, 5.97 years) and underwent a median of 9 ultrasonographic examinations (range, 2-50); 76 patients (6.4%) had surgery for clinical reasons. In analysis of retention, 53 of 1179 patients (4.5%) changed to surgery after a mean (SD) of 2.14 (1.53) years (median, 1.47; range, 0.14-7.17 years); at the study end point, 101 of 1179 patients (8.6%) had not been seen at Kuma Hospital in at least the past 2 years. Kaplan-Meier analysis to 10 years of follow-up time without structural progression estimated that 21.5% (95% CI, 17.0%-28.2%) of patients would not have had an ultrasonographic examination within at least the past 2 years. Mean adherence over a surveillance period of 10 follow-up ultrasonographic examinations (8878 person-examinations) was 91% (range, 85%-95%). Receipt of detailed test results, education regarding active surveillance, and supportive/collaborative style interactions with their physician were identified by patients as key factors for continuing surveillance. Conclusions and Relevance: For patients with low-risk papillary thyroid cancer participating in active surveillance, retention in the program and adherence to follow-up ultrasonographic examination do not appear to be barriers to broader implementation of surveillance. The program's success may benefit from an approach analogous to traveler (patient) and their guide (clinician): the clinician advising on options, advocating for the optimal path over time, and supportively reaffirming the care plan or recommending alternatives as conditions change.

Discharge-ready volume status in acute decompensated heart failure: a survey of hospitalists.

Acute decompensated heart failure is the leading cause of hospitalization in older adults. Clinical practice guidelines recommend patients should be euvolemic at hospital discharge - yet accurate assessment of volume status is recognized to be exceptionally challenging. This conundrum led us to investigate how hospitalists are assessing volume status and discharge- readiness of patients hospitalized with heart failure. We collected audience response data during a didactic heart failure presentation at the 2019 Society of Hospital Medicine annual meeting. Respondents (n = 216), 76% of whom were practicing physician hospitalists caring for more than 20 acute heart failure patients per year, were presented six questions. Eighteen percent of respondents reported not being able to determine the completeness of decongestion on discharge and 32% reported that complete decongestion was not a treatment target. These findings suggest important differences between guideline recommendations and how hospitalists treat heart failure in current clinical practice.

Survey research in anesthesiology: a field guide to interpretation.

BACKGROUND: Survey research, indispensable for assessing subjective outcomes in anesthesiology, can nonetheless be challenging to undertake and interpret. OBJECTIVE: To present a user-friendly guide for the appraisal of survey-derived evidence, and to apply it to published survey research in the anesthesia literature. METHODS: Synthesizing published expert guidance regarding methodology and reporting, we discuss five essential criteria (with subcomponents) for evaluating survey research: (1) relevance of survey outcome to research objective, (2) trustworthiness of the instrument (testing/validation, availability), (3) collecting information well (sampling, administration), (4) representativeness (response rate), and (5) guidance towards interpretation of survey findings (generalizability, interpretation of numerical outcomes). These criteria were subsequently applied by two independent assessors to original research articles reporting survey findings, published in the five highest impact general anesthesia journals ('Anaesthesia', 'Anesthesia & Analgesia', 'Anesthesiology', 'British Journal of Anaesthesia' and 'European Journal of Anaesthesiology') between July 01, 2016, and December 31, 2017, which were identified using a prespecified PubMed search strategy. RESULTS: Among 1107 original articles published, we identified 97 reporting survey research either employing novel survey instruments (58%), established surveys (30%), or sets of single-item scores (12%). The extent to which reader-oriented benchmarks were achieved varied by component and between survey types. Results were particularly mixed for validation (mentioned for 41% of novel and 86% of established surveys) and discussion of generalizability (59% of novel survey reports, 45% of established surveys, and 17% of sets of single-item scores). CONCLUSION: Survey research is not uncommon in anesthesiology, frequently employs novel survey instruments, and demonstrates mixed results in terms of transparency and interpretability. We provide readers with a practical framework for critical interpretation of survey-derived outcomes.

Association of Regional Practice Environment Intensity and the Ability of Internists to Practice High-Value Care After Residency.

Importance: Use of health care services and physician practice patterns have been shown to vary widely across the United States. Although practice patterns-in particular, physicians' ability to provide high-quality, high-value care-develop during training, the association of a physician's regional practice environment with that ability is less well understood. Objective: To examine the association between health care intensity in the region where physicians practice and their ability to practice high-value care, specifically for physicians whose practice environment changed due to relocation after residency. Design, Setting, and Participants: This cohort study included a national sample of 3896 internal medicine physicians who took the 2002 American Board of Internal Medicine initial certification examination followed approximately 1 decade (April 21, 2011, to May 7, 2015) later by the Maintenance of Certification (MOC) examination. At the time of the MOC examination, 2714 of these internists were practicing in a new region. Data were analyzed from March 6, 2016, to May 21, 2018. Exposures: Intensity of care in the Dartmouth Atlas hospital referral region (HRR), measured by per-enrollee end-of-life physician visits (primary) and current practice type (secondary). Main Outcomes and Measures: The outcome, a physician's ability to practice high-value care, was assessed using the Appropriately Conservative Management (ACM) score on the MOC examination, measuring performance across all questions for which the correct answer was the most conservative option. The exposure, regional health care intensity, was measured as per-enrollee end-of-life physician visits in the Dartmouth Atlas HRR of the physician's practice. Results: Among the 3860 participating internists included in the analysis (2030 men [52.6%]; mean [SD] age, 45.6 [4.5] years), those who moved to regions in the quintile of highest health care intensity had an ACM score 0.22 SD lower (95% CI, -0.32 to -0.12) than internists who moved to regions in the quintile of lowest intensity, controlling for postresidency ACM scores. This difference reflected scoring in the 44th compared with the 53rd percentile of all examinees. This association was mildly attenuated (0.18 SD less; 95% CI, -0.28 to -0.09) after adjustment for physician and practice characteristics. Conclusions and Relevance: This study found that practice patterns of internists who relocate after residency training appear to migrate toward norms of the new region. The demands of practicing in high-intensity regions may erode the ability to practice high-value conservative care.

The impact of low- versus high-intensity surveillance cystoscopy on surgical care and cancer outcomes in patients with high-risk non-muscle-invasive bladder cancer (NMIBC).

PURPOSE: To assess the association of low- vs. guideline-recommended high-intensity cystoscopic surveillance with outcomes among patients with high-risk non-muscle invasive bladder cancer (NMIBC). MATERIALS & METHODS: A retrospective cohort study of Veterans Affairs patients diagnosed with high-risk NMIBC between 2005 and 2011 with follow-up through 2014. Patients were categorized by number of surveillance cystoscopies over two years following diagnosis: low- (1-5) vs. high-intensity (6 or more) surveillance. Propensity score adjusted regression models were used to assess the association of low-intensity cystoscopic surveillance with frequency of transurethral resections, and risk of progression to invasive disease and bladder cancer death. RESULTS: Among 1,542 patients, 520 (33.7%) underwent low-intensity cystoscopic surveillance. Patients undergoing low-intensity surveillance had fewer transurethral resections (37 vs. 99 per 100 person-years; p<0.001). Risk of death from bladder cancer did not differ significantly by low (cumulative incidence [CIn] 8.4% [95% CI 6.5-10.9) at 5 years) vs. high-intensity surveillance (CIn 9.1% [95% CI 7.4-11.2) at 5 years, p = 0.61). Low vs. high-intensity surveillance was not associated with increased risk of bladder cancer death among patients with Ta (CIn 5.7% vs. 8.2% at 5 years p = 0.24) or T1 disease at diagnosis (CIn 10.2% vs. 9.1% at 5 years, p = 0.58). Among patients with Ta disease, low-intensity surveillance was associated with decreased risk of progression to invasive disease (T1 or T2) or bladder cancer death (CIn 19.3% vs. 31.3% at 5 years, p = 0.002). CONCLUSIONS: Patients with high-risk NMIBC undergoing low- vs. high-intensity cystoscopic surveillance underwent fewer transurethral resections, but did not experience an increased risk of progression or bladder cancer death. These findings provide a strong rationale for a clinical trial to determine whether low-intensity surveillance is comparable to high-intensity surveillance for cancer control in high-risk NMIBC.

Patient information sources when facing repair of abdominal aortic aneurysm.

OBJECTIVE: Shared medical decision making is most important when there are competing options for repair such as in treatment of abdominal aortic aneurysm (AAA). We sought to understand the sources of patients' pre-existing knowledge about AAA to better inform treating physicians about patients' needs for preoperative counseling. METHODS: We performed a multicenter survey of patients facing AAA repair at 20 Veterans Affairs hospitals across the United States as part of the Preferences for Open Versus Endovascular Repair of AAA study. A validated survey instrument was administered to examine the sources of information available and commonly used by patients to learn about their repair options. The survey was administered by study personnel before the patient had any interaction with the vascular surgeon because survey data were collected before the vascular clinic visit. RESULTS: Preliminary analysis of data from 99 patients showed that our cohort was primarily male (99%) and elderly (mean age 73 years). Patients commonly had a history of hypertension (86%), prior myocardial infarction (32%), diabetes (32%), and were overweight (58%). Patients arrived at their surgeon's office appointment with limited information. A majority of patients (52%) reported that they had not talked to their primary care physician at all about their options for AAA repair, and one-half (50%) reported that their view of the different surgical options had not been influenced by anyone. Slightly less than one-half of patients reported that they did not receive any information about open surgical aneurysm repair and endovascular aortic aneurysm repair (41% and 37%, respectively). Few patients indicated using the internet as their main source of information about open surgical aneurysm repair and endovascular aortic aneurysm repair (10% and 11%, respectively). CONCLUSIONS: Patients are commonly referred for AAA repair having little to no information regarding AAA pathology or repair options. Fewer than one in five patients searched the internet or had accessed other sources of information on their own. Most vascular surgeons should assume that patients will present to their first vascular surgery appointment with minimal understanding of the treatment options available to them.

Design of the PReferences for Open Versus Endovascular Repair of Abdominal Aortic Aneurysm (PROVE-AAA) Trial.

For patients with abdominal aortic aneurysm (AAA), randomized trials have found endovascular AAA repair (EVAR) is associated with lower perioperative morbidity and mortality than open surgical repair (OSR). However, OSR has fewer long-term aneurysm-related complications, such as endoleak or late rupture. Patients treated with EVAR and OSR have similar survival rates within two years after surgery, and OSR does not require intensive surveillance. Few have examined if patient preferences are aligned with the type of treatment they receive for their AAA. Although many assume that patients may universally prefer the less-invasive nature of EVAR, our preliminary work suggests that patients who value the lower risk of late complications may prefer OSR. In this study, called The PReferences for Open Versus Endovascular Repair of Abdominal Aortic Aneurysm (PROVE-AAA) trial, we describe a cluster-randomized trial to test if a decision aid can better align patients' preferences and their treatment type for AAA. Patients enrolled in the study are candidates for either endovascular or open repair and are followed up at VA hospitals by vascular surgery teams who regularly perform both types of repair. In Aim 1, we will determine patients' preferences for endovascular or open repair and identify domains associated with each repair type. In Aim 2, we will assess alignment between patients' preferences and the repair type elected and then compare the impact of a decision aid on this alignment between the intervention and control groups. This study will help us to accomplish two goals. First, we will better understand the factors that affect patient preference when choosing between EVAR and OSR. Second, we will better understand if a decision aid can help patients be more likely to receive the treatment strategy they prefer for their AAA. Study enrollment began on June 1, 2017. Between June 1, 2017 and November 1, 2018, we have enrolled 178 of a total goal of 240 veterans from 20 VA medical centers and their vascular surgery teams across the country. We anticipate completing enrollment in PROVE-AAA in June 2019, and study analyses will be performed thereafter.

The impact of frequent cystoscopy on surgical care and cancer outcomes among patients with low-risk, non-muscle-invasive bladder cancer.

BACKGROUND: Surveillance recommendations for patients with low-risk, non-muscle-invasive bladder cancer (NMIBC) are based on limited evidence. The objective of this study was to add to the evidence by assessing outcomes after frequent versus recommended cystoscopic surveillance. METHODS: This was a retrospective cohort study of patients diagnosed with low-risk (low-grade Ta (AJCC)) NMIBC from 2005 to 2011 with follow-up through 2014 from the Department of Veterans Affairs. Patients were classified as having undergone frequent versus recommended cystoscopic surveillance (>3 vs 1-3 cystoscopies in the first 2 years after diagnosis). By using propensity score-adjusted models, the authors estimated the impact of frequent cystoscopy on the number of transurethral resections, the number of resections without cancer in the specimen, and the risk of progression to muscle-invasive cancer or bladder cancer death. RESULTS: Among 1042 patients, 798 (77%) had more frequent cystoscopy than recommended. In adjusted analyses, the frequent cystoscopy group had twice as many transurethral resections (55 vs 26 per 100 person-years; P < .001) and more than 3 times as many resections without cancer in the specimen (5.7 vs 1.6 per 100 person-years; P < .001). Frequent cystoscopy was not associated with time to progression or bladder cancer death (3% at 5 years in both groups; P = .990). CONCLUSIONS: Frequent cystoscopy among patients with low-risk NMIBC was associated with twice as many transurethral resections and did not decrease the risk for bladder cancer progression or death, supporting current guidelines.

Overuse of Cystoscopic Surveillance Among Patients With Low-risk Non-Muscle-invasive Bladder Cancer - A National Study of Patient, Provider, and Facility Factors.

OBJECTIVE: To understand cystoscopic surveillance practices among patients with low-risk non-muscle-invasive bladder cancer (NMIBC) within the Department of Veterans Affairs (VA). METHODS: Using a validated natural language processing algorithm, we included patients newly diagnosed with low-risk (ie low-grade Ta) NMIBC from 2005 to 2011 in the VA. Patients were followed until cancer recurrence, death, last contact, or 2 years after diagnosis. Based on guidelines, surveillance overuse was defined as >1 cystoscopy if followed <1 year, >2 cystoscopies if followed 1 to <2 years, or >3 cystoscopies if followed for 2 years. We identified patient, provider, and facility factors associated with overuse using multilevel logistic regression. RESULTS: Overuse occurred in 75% of patients (852/1135) - with an excess of 1846 more cystoscopies performed than recommended. Adjusting for 14 factors, overuse was associated with patient race (odds ratio [OR] 0.49, 95% confidence interval [CI]: 0.28, 0.85 unlisted race vs White), having 2 comorbidities (OR 1.60, 95% CI: 1.00, 2.55 vs no comorbidities), and earlier year of diagnosis (OR 2.50, 95% CI: 1.29, 4.83 for 2005 vs 2011, and OR 2.03, 95% CI: 1.11, 3.69 for 2006 vs 2011). On sensitivity analyses assuming all patients were diagnosed with multifocal or large low-grade tumors (ie, intermediate-risk), overuse would have still occurred in 45% of patients. CONCLUSION: Overuse of cystoscopy among patients with low-risk NMIBC was common, raising concerns about bladder cancer surveillance cost and quality. However, few factors were associated with overuse. Further qualitative research is needed to identify other determinants of overuse not readily captured in administrative data.

Extent of Risk-Aligned Surveillance for Cancer Recurrence Among Patients With Early-Stage Bladder Cancer.

IMPORTANCE: Cancer care guidelines recommend aligning surveillance frequency with underlying cancer risk, ie, more frequent surveillance for patients at high vs low risk of cancer recurrence. OBJECTIVE: To assess the extent to which such risk-aligned surveillance is practiced within US Department of Veterans Affairs facilities by classifying surveillance patterns for low- vs high-risk patients with early-stage bladder cancer. DESIGN SETTING AND PARTICIPANTS: US national retrospective cohort study of a population-based sample of patients diagnosed with low-risk or high-risk early-stage bladder between January 1, 2005, and December 31, 2011, with follow-up through December 31, 2014. Analyses were performed March 2017 to April 2018. The study included all Veterans Affairs facilities (n = 85) where both low-and high-risk patients were treated. EXPOSURES: Low-risk vs high-risk cancer status, based on definitions from the European Association of Urology risk stratification guidelines and on data extracted from diagnostic pathology reports via validated natural language processing algorithms. MAIN OUTCOMES AND MEASURES: Adjusted cystoscopy frequency for low-risk and high-risk patients for each facility, estimated using multilevel modeling. RESULTS: The study included 1278 low-risk and 2115 high-risk patients (median [interquartile range] age, 77 [71-82] years; 99% [3368 of 3393] male). Across facilities, the adjusted frequency of surveillance cystoscopy ranged from 3.7 to 6.2 (mean, 4.8) procedures over 2 years per patient for low-risk patients and from 4.6 to 6.0 (mean, 5.4) procedures over 2 years per patient for high-risk patients. In 70 of 85 facilities, surveillance was performed at a comparable frequency for low- and high-risk patients, differing by less than 1 cystoscopy over 2 years. Surveillance frequency among high-risk patients statistically significantly exceeded surveillance among low-risk patients at only 4 facilities. Across all facilities, surveillance frequencies for low- vs high-risk patients were moderately strongly correlated (r = 0.52; P < .001). CONCLUSIONS AND RELEVANCE: Patients with early-stage bladder cancer undergo cystoscopic surveillance at comparable frequencies regardless of risk. This finding highlights the need to understand barriers to risk-aligned surveillance with the goal of making it easier for clinicians to deliver it in routine practice.

Assembling and validating data from multiple sources to study care for Veterans with bladder cancer.

BACKGROUND: Despite the high prevalence of bladder cancer, research on optimal bladder cancer care is limited. One way to advance observational research on care is to use linked data from multiple sources. Such big data research can provide real-world details of care and outcomes across a large number of patients. We assembled and validated such data including (1) administrative data from the Department of Veterans Affairs (VA), (2) Medicare claims, (3) data abstracted by tumor registrars, (4) data abstracted via chart review from the national electronic health record, and (5) full text pathology reports. METHODS: Based on these combined data, we used administrative data to identify patients with newly diagnosed bladder cancer who received care in the VA. To validate these data, we first compared the diagnosis date from the administrative data to that from the tumor registry. Second, we measured accuracy of identifying bladder cancer care in VA administrative data, using a random chart review (n = 100) as gold standard. Lastly, we compared the proportion of patients who received bladder cancer care among those who did versus did not have full text bladder pathology reports available, expecting that those with reports are significantly more likely to receive care in VA. RESULTS: Out of 26,675 patients, 11,323 (42%) had tumor registry data available. 90% of these patients had a difference of 90 days or less between the diagnosis dates from administrative and registry data. Among 100 patients selected for chart review, 59 received bladder cancer care in VA, 58 of which were correctly identified using administrative data (sensitivity 98%, specificity 90%). Receipt of bladder cancer care was substantially more common among those who did versus did not have bladder pathology available (96% vs. 43%, p < 0.001). CONCLUSION: Merging administrative with electronic health record and pathology data offers new possibilities to validate the use of administrative data in bladder cancer research.

Development of a Natural Language Processing Engine to Generate Bladder Cancer Pathology Data for Health Services Research.

OBJECTIVE: To take the first step toward assembling population-based cohorts of patients with bladder cancer with longitudinal pathology data, we developed and validated a natural language processing (NLP) engine that abstracts pathology data from full-text pathology reports. METHODS: Using 600 bladder pathology reports randomly selected from the Department of Veterans Affairs, we developed and validated an NLP engine to abstract data on histology, invasion (presence vs absence and depth), grade, the presence of muscularis propria, and the presence of carcinoma in situ. Our gold standard was based on an independent review of reports by 2 urologists, followed by adjudication. We assessed the NLP performance by calculating the accuracy, the positive predictive value, and the sensitivity. We subsequently applied the NLP engine to pathology reports from 10,725 patients with bladder cancer. RESULTS: When comparing the NLP output to the gold standard, NLP achieved the highest accuracy (0.98) for the presence vs the absence of carcinoma in situ. Accuracy for histology, invasion (presence vs absence), grade, and the presence of muscularis propria ranged from 0.83 to 0.96. The most challenging variable was depth of invasion (accuracy 0.68), with an acceptable positive predictive value for lamina propria (0.82) and for muscularis propria (0.87) invasion. The validated engine was capable of abstracting pathologic characteristics for 99% of the patients with bladder cancer. CONCLUSION: NLP had high accuracy for 5 of 6 variables and abstracted data for the vast majority of the patients. This now allows for the assembly of population-based cohorts with longitudinal pathology data.

The Burden of Cystoscopic Bladder Cancer Surveillance: Anxiety, Discomfort, and Patient Preferences for Decision Making.

OBJECTIVE: To examine discomfort, anxiety, and preferences for decision making in patients undergoing surveillance cystoscopy for non-muscle-invasive bladder cancer (NMIBC). METHODS: Veterans with a prior diagnosis of NMIBC completed validated survey instruments assessing procedural discomfort, worry, and satisfaction, and were invited to participate in semistructured focus groups about their experience and desire to be involved in surveillance decision making. Focus group transcripts were analyzed qualitatively, using (1) systematic iterative coding, (2) triangulation involving multiple perspectives from urologists and an implementation scientist, and (3) searching and accounting for disconfirming evidence. RESULTS: Twelve patients participated in 3 focus groups. Median number of lifetime cystoscopy procedures was 6.5 (interquartile range 4-10). Based on survey responses, two-thirds of participants (64%) experienced some degree of procedural discomfort or worry, and all participants reported improvement in at least 2 dimensions of overall well-being following cystoscopy. Qualitative analysis of the focus groups indicated that participants experience preprocedural anxiety and worry about their disease. Although many participants did not perceive themselves as having a defined role in decision making surrounding their surveillance care, their preferences to be involved in decision making varied widely, ranging from acceptance of the physician's recommendation, to uncertainty, to dissatisfaction with not being involved more in determining the intensity of surveillance care. CONCLUSION: Many patients with NMIBC experience discomfort, anxiety, and worry related to disease progression and not only cystoscopy. Although some patients are content to defer surveillance decisions to their physicians, others prefer to be more involved. Future work should focus on defining patient-centered approaches to surveillance decision making.

Early Stage Bladder Cancer: Do Pathology Reports Tell Us What We Need to Know?

OBJECTIVE: To assess a large national sample of bladder cancer pathology reports to determine if they contained the components necessary for clinical decision-making. METHODS: We examined a random sample of 507 bladder cancer pathology reports from the national Department of Veterans Affairs Corporate Data Warehouse to assess whether each included information on the 4 report components explicitly recommended by the College of American Pathologists' protocol for the examination of such specimens: histology, grade, presence vs absence of muscularis propria in the specimen, and microscopic extent. We then assessed variation in the proportion of reports lacking at least 1 component across Department of Veterans Affairs facilities. RESULTS: One hundred eight of 507 reports (21%) lacked at least 1 of the 4 components, with microscopic extent and presence vs absence of muscularis propria in the specimen most commonly missing (each in 11% of reports). There was wide variation across facilities in the proportion of reports lacking at least 1 component, ranging from 0% to 80%. CONCLUSION: One-fifth of bladder cancer pathology reports lack information needed for clinical decision-making. The wide variation in incomplete report rates across facilities implies that some facilities already have implemented best practices assuring complete reporting whereas others have room for improvement. Future work to better understand barriers and facilitators of complete reporting may lead to interventions that improve bladder cancer care.