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PURPOSE: Postoperative education and symptom tracking are essential following cystectomy to reduce readmission rates and information overload. To address these issues, an internet-based tool was developed to provide education, alerts, and symptom tracking. We aimed to evaluate the tool's feasibility, acceptability, and impact on complication and readmission rates. MATERIALS AND METHODS: Thirty-three eligible patients over 18 years old scheduled for cystectomy were enrolled. Patients were asked to use the mobile health (mHealth) tool daily for the first 2 weeks, then less frequently up to 90 days after discharge. Descriptive statistics were used to summarize study variables. Feasibility was defined as at least 50% of patients using the tool once a week, and acceptability as patient satisfaction of > 75%. RESULTS: Use of the mHealth tool was feasible, with 90% of patients using it 1 week after discharge, but engagement declined over time to 50%, with technological difficulties being the main reason for nonengagement. Patient and provider acceptability was high, with satisfaction > 90%. Within 90 days, 36% experienced complications after discharge and 30% were readmitted. Engagement with the mHealth application varied but was not statistically associated with readmission (P = .21). CONCLUSIONS: The study showed that the electronic mobile health intervention for patients undergoing cystectomy was feasible, acceptable, and provided valuable educational content and symptom management. Future larger studies are needed to determine the tool's effectiveness in improving patient outcomes and its potential implementation into routine clinical care.
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Telemedicina , Neoplasias de la Vejiga Urinaria , Humanos , Adolescente , Cistectomía/efectos adversos , Neoplasias de la Vejiga Urinaria/cirugía , Estudios de Factibilidad , Complicaciones Posoperatorias/epidemiología , Complicaciones Posoperatorias/etiología , Complicaciones Posoperatorias/prevención & control , Readmisión del PacienteRESUMEN
PURPOSE: The aim of this mixed methods study was to investigate patient and provider perceptions of repeat transurethral resection of bladder tumors to improve counseling as new nonsurgical treatment modalities for nonmuscle-invasive bladder cancer emerge. MATERIALS AND METHODS: Quantitative data were collected via a web-based survey through the Bladder Cancer Advocacy Network of patients with nonmuscle-invasive bladder cancer who had undergone at least 1 transurethral resection of bladder tumor. Bivariable and multivariable analyses were performed to evaluate associations of patient demographics and clinical variables with treatment preference. Qualitative data were collected with 60 in-depth telephone interviews with patients (n=40) and urologists (n=20) to understand experiences with bladder cancer and transurethral resection of bladder tumor. Telephone interviews were conducted by trained qualitative experts. Transcripts were imported into Dedoose to facilitate analysis. RESULTS: Survey data of 352 patients showed 210 respondents (60%) preferred repeat transurethral resection of bladder tumor while 142 (40%) preferred intravesical chemoablation. Patients who preferred repeat transurethral resection of bladder tumor were more likely to prioritize initial treatment effectiveness (63%), whereas those who preferred chemoablation prioritized risk of recurrence (55%). Variables associated with a preference for intravesical chemoablation included U.S. residence (OR=2; 95% CI 1.1, 3.8), or if they expressed their reason for treatment preference as priority of recurrence risk over effectiveness (OR=14.6; 95% CI 7.4, 28.5). Predominant interview themes varied across participants, with patients but not urologists emphasizing the emotional toll of the procedure along with the need for improved counseling regarding recurrence, terminology, and cancer-related signs and symptoms. CONCLUSIONS: Differences exist in the way patients and urologists perceive repeat transurethral resection of bladder tumor for bladder cancer. Understanding transurethral resection of bladder tumor perception will aid in shared decision making as novel treatments emerge for nonmuscle-invasive bladder cancer.
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Resección Transuretral de la Vejiga , Neoplasias de la Vejiga Urinaria , Humanos , Neoplasias de la Vejiga Urinaria/cirugía , PercepciónRESUMEN
PURPOSE: Optima II ("OPTimized Instillation of Mitomycin for Bladder Cancer Treatment," clinicaltrials.gov: NCT03558503) was a phase 2b trial evaluating a nonsurgical alternative as a primary treatment for nonmuscle-invasive bladder cancer (NMIBC). Patients received 6 weekly instillations of UGN-102, a mitomycin-containing reverse thermal gel. This is the first study to report on patient-reported side effects of UGN-102. MATERIALS AND METHODS: Sixty-three patients enrolled in Optima II from 20 sites. Of these 63 patients, 44 were in the cohort completing a quarterly patient-reported outcome measure assessing side effects. Changes in side effects were evaluated using the Wilcoxon signed-rank test. Associations of 3-month outcomes with demographic and clinical characteristics were examined with regression, controlling for baseline values. Ten of 44 patients (23%) were interviewed after the trial to understand tolerability for future patients making treatment decisions. Transcripts were double-coded using standard methods. RESULTS: In the patient-reported outcome measure cohort (44), 61% were men, 57% aged 65+ years and 89% were non-Hispanic White. UGN-102 did not cause decrements in patient-reported urinary symptoms, bloating/flatulence or malaise at the primary endpoint of 3 months. Sexual function mildly worsened. Future health worries improved. Demographics were not correlated with changes. Clinically, sexual function was correlated with new NMIBC and bloating/flatulence was associated with transurethral resection of bladder tumor within 12 months. In interviews, patients appreciated a nonsurgical alternative, would recommend the gel to other patients and would choose the gel over surgery. CONCLUSIONS: A nonsurgical, chemoablative gel (UGN-102) used as a primary treatment for NMIBC offers a more patient-centered therapeutic approach than standard treatments.
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Neoplasias de la Vejiga Urinaria , Administración Intravesical , Adulto , Antibióticos Antineoplásicos/uso terapéutico , Femenino , Flatulencia/inducido químicamente , Flatulencia/tratamiento farmacológico , Humanos , Masculino , Mitomicina/efectos adversos , Invasividad Neoplásica/patología , Recurrencia Local de Neoplasia/patología , Medición de Resultados Informados por el Paciente , Neoplasias de la Vejiga Urinaria/cirugíaRESUMEN
A 4-hour-old infant with profound cyanosis on an alprostadil infusion was urgently transferred to Rady Children's Hospital with suspected CHD. Upon arrival, urgent echocardiography was performed but could not confirm the presence of discrete pulmonary veins or pulmonary venous drainage. Given the difficulty in delineating the anatomy, a cardiac CT scan was performed and demonstrated a nearly atretic common pulmonary vein with multiple small collaterals that drained to systemic veins. Due to the high risk of mortality associated with operative repair, the decision was made to proceed with compassionate withdrawal of care. The described anatomy of common pulmonary vein atresia remains rare, and to our knowledge, fewer than 40 cases have been reported in the literature. Albeit rare, common pulmonary vein atresia should be considered in the differential diagnosis of a severely cyanotic neonate.
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Cardiopatías Congénitas , Venas Pulmonares , Malformaciones Vasculares , Niño , Cianosis/complicaciones , Ecocardiografía , Cardiopatías Congénitas/complicaciones , Cardiopatías Congénitas/diagnóstico por imagen , Humanos , Lactante , Recién Nacido , Venas Pulmonares/anomalías , Malformaciones Vasculares/complicacionesRESUMEN
OBJECTIVE: To examine if fluid balance surrounding pediatric intensive care unit (PICU) admission in hematopoietic stem cell transplant (HSCT) patients was associated with mortality, ventilator-free days, and intensive care unit (ICU)-free days. To explore other population-specific factors associated with poor outcome. MATERIALS AND METHODS: Retrospective review of HSCT patients admitted to 2 quaternary PICUs, Children's Hospital Los Angeles and University of California San Francisco Benioff Children's Hospital from January 2009 to December 2014. RESULTS: Of 144 patients, 92 were identified with complete fluid balance data available. No difference in fluid balance between survivors and nonsurvivors in the 24 hours preceding PICU admission (P = .81) or when the first 24 hours of PICU stay were taken into account (P = .48) was identified. There was no difference in ventilator-free or ICU-free days. Comparing Pediatric Index of Mortality (PIM)-2, Pediatric Risk of Mortality (PRISM)-3, and a multivariable model using independent risk factors identified through multivariable analysis, the receiver operating characteristic plot for the multivariable model (area under the curve = 0.844 [95% confidence interval: 0.77-0.92]) was superior to both PIM-2 and PRISM-3 in discriminating mortality. CONCLUSIONS: Fluid balance immediately preceding and early in the course of admission was not associated with mortality in PICU HSCT patients. A subset of variables was identified which better discriminated mortality in this cohort than accepted PICU severity of illness scores.
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Enfermedad Crítica , Trasplante de Células Madre Hematopoyéticas , Niño , Trasplante de Células Madre Hematopoyéticas/efectos adversos , Humanos , Unidades de Cuidado Intensivo Pediátrico , Estudios Retrospectivos , Factores de Riesgo , Equilibrio HidroelectrolíticoRESUMEN
BACKGROUND: Preventable complications and readmissions after cystectomy may be detectable via postoperative monitoring of patient-reported outcomes (PROs). However, no study has defined meaningful PROs or the use of mobile communication devices (mobile health [mHealth]) to capture them. The objectives of this study were to determine which high-priority PROs influence patients' perioperative experience, what processes influence these outcomes, how patients and caregivers differ in their experiences, and how mHealth might be used to improve outcomes. METHODS: Forty-five semistructured, in-depth interviews were conducted with readmitted cystectomy patients, caregivers, and providers with an interview guide that addressed perioperative education, symptoms, function, and the potential for mHealth interventions. Among 15 patients, 10 had an interviewed partner. A thematic analysis of interviews conducted with readmitted patients, caregivers, and providers was performed to examine processes that affected perioperative care and readmission and to determine how mHealth interventions might be implemented. RESULTS: Readmitted patients and caregivers ranged in age from 33 to 78 years and were diverse in race and stage. The providers included a diverse representation of physicians, nurses, and other specialists. Cystectomy preoperative education was overwhelming and lacked personalization, and this contributed to a fundamental lack of knowledge regarding normal and abnormal symptoms after surgery. Three connecting themes were identified: 1) cystectomy education overload, 2) a need to define normal symptoms, and 3) education with incremental learning through mHealth. CONCLUSIONS: A personalized mHealth intervention addressing themes of education overload, the definition of normality, and incremental learning could be realized through mHealth technology and provide the right information for the right patient at the right time.
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Cistectomía , Neoplasias/epidemiología , Readmisión del Paciente/estadística & datos numéricos , Telemedicina , Adulto , Anciano , Actitud del Personal de Salud , Cuidadores/psicología , Femenino , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Neoplasias/patología , Neoplasias/cirugía , Atención Perioperativa , Médicos/psicologíaRESUMEN
PURPOSE: Men with clinically localized prostate cancer face an archetypal "preference sensitive" treatment decision. A shared decision making process incorporating patient values and preferences is paramount. We evaluated the benefit of a novel decision making application, and investigated associations between patient preferences and treatment choice. MATERIALS AND METHODS: We used a novel, web based application that provides education, preference measurement and personalized decision analysis for patients with newly diagnosed prostate cancer. Preferences are measured using conjoint analysis. The application ranks treatment options according to their "fit" (expected value) based on clinical factors and personal preferences, and serves as the basis for shared decision making during the consultation. We administered the decisional conflict scale before and after completion of the application. Additionally, we compared post-visit perceptions of shared decision making between a baseline "usual care" cohort and a cohort seen after the application was integrated into clinical practice. RESULTS: A total of 109 men completed the application before their consultation, and had decisional conflict measured before and after use. Overall decisional conflict decreased by 37% (p <0.0001). Analysis of the decisional conflict subscales revealed statistically significant improvements in all 5 domains. Patients completing the decision making application (33) felt more included in (88% vs 57%, p=0.01) and jointly responsible for (94% vs 52%, p <0.0001) the decision about further treatment compared to those receiving usual care (24). More patients who completed the application strongly agreed that different treatment options were discussed (94% vs 74%, p=0.02). CONCLUSIONS: Implementation of this web based intervention was associated with decreased decisional conflict and enhanced elements of shared decision making.
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Toma de Decisiones , Participación del Paciente/estadística & datos numéricos , Prioridad del Paciente/estadística & datos numéricos , Sistemas de Atención de Punto/estadística & datos numéricos , Neoplasias de la Próstata/terapia , Adulto , Anciano , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Persona de Mediana Edad , Derivación y Consulta , Encuestas y CuestionariosRESUMEN
A 12-month-old male with a history of failure to thrive and hypothyroidism presented to a pediatric emergency department twice in a 24-hour period with complaint of hematemesis. The patient had a recent upper endoscopy and biopsy as part of a work-up for failure to thrive, but had no other pertinent positives in clinical history. Ultrasound demonstrated findings concerning for an intramural duodenal hematoma. The patient was admitted to the gastroenterology service for intravenous hydration and nasogastric decompression. He did not require any invasive management or blood products. Duodenal hematoma is a known, but very uncommon complication of upper endoscopy.
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Biopsia/efectos adversos , Enfermedades Duodenales/etiología , Duodenoscopía/efectos adversos , Duodeno/lesiones , Hemorragia Gastrointestinal/etiología , Hematemesis/etiología , Hematoma/etiología , Deshidratación/etiología , Enfermedades Duodenales/diagnóstico por imagen , Duodeno/diagnóstico por imagen , Urgencias Médicas , Nutrición Enteral , Insuficiencia de Crecimiento/complicaciones , Insuficiencia de Crecimiento/diagnóstico , Fluidoterapia , Hematoma/diagnóstico por imagen , Humanos , Lactante , Intubación Gastrointestinal , Masculino , Recurrencia , Ultrasonografía , Vómitos/etiologíaRESUMEN
BACKGROUND: In 2023, an estimated 82,290 individuals were diagnosed with bladder cancer in the United States. For muscle-invasive bladder cancer (MIBC), the American Urological Association recommends offering radical cystectomy with cisplatin-based neoadjuvant chemotherapy. However, patients are increasingly requesting alternative treatments. OBJECTIVE: To describe factors influencing selection of radical cystectomy with cisplatin-based neoadjuvant chemotherapy (NACâ+âRC), radical cystectomy monotherapy (RC), or tri-modality therapy (TMT) among patients with MIBC. METHODS: Individual, semi-structured phone interviews were conducted with 18 adults who underwent MIBC treatment at the University of North Carolina, recruiting six patients each from three treatment groups: 1) NACâ+âRC, 2) RC, and 3) TMT. Interview transcriptions were qualitatively analyzed using QSR NVivo, with major themes and sub-themes extracted. Patients also completed the Shared Decision-Making Questionnaire (SDM-Q-9; range 0-100). RESULTS: Concern for survival and risks, quality of life, and varied patient preferences for involvement influenced the decision-making process. Concern surrounding sexual function, bladder preservation, and urostomy bags drove patients towards TMT. High levels of shared decision-making were observed overall, with a median SDM-Q-9 score of 95 (IQR 89-100). Patients undergoing TMT reported the highest median SDM-Q-9 score (97, IQR 94-100), while those receiving radical cystectomy alone had the lowest (66, IQR 37-96). CONCLUSIONS: Patients with MIBC described a multifaceted treatment decision-making process, highlighting key influences, concerns, and unmet needs. Understanding this process can help address misconceptions and align treatment choices with patient goals. Physicians can use these insights to engage in shared decision-making, ultimately improving patient experiences and outcomes.
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The catecholamines dopamine (DA) and norepinephrine (NE) have been repeatedly implicated in neuropsychiatric vulnerability, in part via their roles in mediating the decision making processes. Although the two neuromodulators share a synthesis pathway and are co-activated under states of arousal, they engage in distinct circuits and roles in modulating neural activity across the brain. However, in the computational neuroscience literature, they have been assigned similar roles in modulating the latent cognitive processes of decision making, in particular the exploration-exploitation tradeoff. Revealing how each neuromodulator contributes to this explore-exploit process will be important in guiding mechanistic hypotheses emerging from computational psychiatric approaches. To understand the differences and overlaps of the roles of these two catecholamine systems in regulating exploration and exploitation, a direct comparison using the same dynamic decision making task is needed. Here, we ran mice in a restless two-armed bandit task, which encourages both exploration and exploitation. We systemically administered a nonselective DA receptor antagonist (flupenthixol), a nonselective DA receptor agonist (apomorphine), a NE beta-receptor antagonist (propranolol), and a NE beta-receptor agonist (isoproterenol), and examined changes in exploration within subjects across sessions. We found a bidirectional modulatory effect of dopamine receptor activity on the level of exploration. Increasing dopamine activity decreased exploration and decreasing dopamine activity increased exploration. Beta-noradrenergic receptor activity also modulated exploration, but the modulatory effect was mediated by sex. Reinforcement learning model parameters suggested that dopamine modulation affected exploration via decision noise and norepinephrine modulation affected exploration via outcome sensitivity. Together, these findings suggested that the mechanisms that govern the transition between exploration and exploitation are sensitive to changes in both catecholamine functions and revealed differential roles for NE and DA in mediating exploration.
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BACKGROUND: We sought to compare outcomes for infants with tetralogy of Fallot with pulmonary atresia (TOF/PA) and confluent pulmonary arteries who underwent staged or primary complete surgical repair. METHODS: This retrospective study included infants undergoing initial surgical intervention between 0 and 60 days of age with TOF/PA without aortopulmonary collaterals from 2009 to 2018 at 20 centers. The primary outcome was days alive and out of the hospital in the first year of life (DAOH365). Secondary outcomes were mortality at 1 year of age and a composite major complication outcome. Multivariable modeling with generalized estimating equations were used to compare outcomes between groups. RESULTS: Of 221 subjects, 142 underwent staged repair and 79 underwent primary complete repair. There was no significant difference in median DAOH365 between the staged and primary repair groups (317 days [interquartile range, 278-336] vs 338 days [interquartile range, 314-348], respectively; adjusted P = .13). Nine staged repair patients (7%) died in the first year of life vs 5 primary repair patients (6%; adjusted odds ratio, 1.00; 95% CI, 0.25-3.95). At least 1 major complication occurred in 37% of patients who underwent staged repair vs 41% of patients who underwent primary complete repair (P = .75), largely driven by the need for unplanned cardiac reinterventions. CONCLUSIONS: For infants with TOF/PA with confluent pulmonary arteries, a surgical strategy of staged or primary complete repair resulted in statistically similar DAOH365, early mortality, and morbidity.
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Procedimientos Quirúrgicos Cardíacos , Atresia Pulmonar , Tetralogía de Fallot , Lactante , Humanos , Tetralogía de Fallot/complicaciones , Estudios Retrospectivos , Procedimientos Quirúrgicos Cardíacos/métodos , Resultado del Tratamiento , Arteria Pulmonar/cirugía , Arteria Pulmonar/anomalíasRESUMEN
Importance: Preventing in-hospital cardiac arrest (IHCA) likely represents an effective strategy to improve outcomes for critically ill patients, but feasibility of IHCA prevention remains unclear. Objective: To determine whether a low-technology cardiac arrest prevention (CAP) practice bundle decreases IHCA rate. Design, Setting, and Participants: Pediatric cardiac intensive care unit (CICU) teams from the Pediatric Cardiac Critical Care Consortium (PC4) formed a collaborative learning network to implement the CAP bundle consistent with the Institute for Healthcare Improvement framework; 15 hospitals implemented the bundle voluntarily. Risk-adjusted IHCA incidence rates were analyzed across 2 time periods, 12 months (baseline) and 18 months after CAP implementation (intervention) using difference-in-differences (DID) regression to compare 15 CAP and 16 control PC4 hospitals that chose not to participate in CAP but had IHCA rates tracked in the PC4 registry. Patients deemed at high risk for IHCA, based on a priori evidence-based criteria and empirical hospital-specific criteria, were selected to receive the CAP bundle. Data were collected from July 2018 to December 2019, and data were analyzed from March to August 2020. Interventions: CAP bundle included 5 elements developed to promote increased situational awareness and communication among bedside clinicians to recognize and mitigate deterioration in high-risk patients. Main Outcomes and Measures: Risk-adjusted IHCA incidence rate across all CICU admissions (IHCA events divided by all admissions). Results: The bundle was activated in 2664 of 10â¯510 CAP hospital admissions (25.3%); admission characteristics were similar across study periods. There was a 30% relative reduction in risk-adjusted IHCA incidence rate at CAP hospitals (intervention period: 2.6%; 95% CI, 2.2-2.9; baseline: 3.7%; 95% CI, 3.1-4.0), but no change at control hospitals (intervention period: 2.7%; 95% CI, 2.3-2.9; baseline: 2.7%; 95% CI, 2.2-3.0). DID analysis confirmed significantly reduced odds of IHCA among all admissions at CAP hospitals compared with control hospitals during the intervention period vs baseline (odds ratio, 0.72; 95% CI, 0.56-0.91; P = .01). DID odds ratios were 0.72 (95% CI, 0.53-0.98) for the surgical subgroup, 0.74 (95% CI, 0.48-1.14) for the medical subgroup, and 0.72 (95% CI, 0.50-1.03) for the high-risk admission subgroup at CAP hospitals after intervention. All-cause risk-adjusted mortality rate did not change after intervention. Conclusions and Relevance: Implementation of this CAP bundle led to significant IHCA reduction across multiple pediatric CICUs. Future studies may determine if this bundle can be effective in other critically ill populations.
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Enfermedad Crítica , Paro Cardíaco , Niño , Paro Cardíaco/epidemiología , Paro Cardíaco/prevención & control , Mortalidad Hospitalaria , Hospitalización , Hospitales , Humanos , Unidades de Cuidado Intensivo PediátricoRESUMEN
Our goal was to examine the relationship between biological and sociocultural factors that predict utilitarian moral judgment. Utilitarian moral judgments occur when a specific action is based on the outcome rather than its consistency with social norms. We predicted that (1) individuals with higher levels of dopamine will make more utilitarian decisions and (2) individuals who express greater religiosity will make less utilitarian judgments. We measured dopamine using spontaneous eyeblink rate, an indirect measure associated with striatal dopaminergic transmission. A total of 96 participants completed a utilitarian moral judgment task where they made judgments regarding nonmoral, impersonal, personal low-conflict, and personal high-conflict moral dilemmas. Then, participants completed a questionnaire measuring religiosity. We found a negative relationship between religiosity and the proportion of "yes" judgments participants made in the high-conflict personal dilemmas, which was consistent with our second hypothesis. None of our other hypotheses were supported. Understanding biological and cultural factors that relate to utilitarian moral judgment may also help in developing artificial intelligence that more closely mimic human behavior.
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Dopamina , Juicio , Inteligencia Artificial , Teoría Ética , Humanos , Principios Morales , MotivaciónRESUMEN
OBJECTIVE: To assess the feasibility of enrollment and collecting patient-reported outcome (PRO) data as part of routine clinical urologic care for bladder and prostate cancer patients and examine overall patterns and racial variations in PRO use and symptom reports over time. SUBJECTS/PATIENTS AND METHODS: We recruited 76 patients (nâ¯=â¯29 Black and nâ¯=â¯47 White) with prostate or bladder cancer at a single, comprehensive cancer center. The majority of prostate cancer patients had intermediate risk (57%) disease and underwent either radiation or prostatectomy. Over half (58%) of bladder cancer patients had muscle invasive disease and underwent cystectomy. Patients were asked to complete PRO symptom surveys using their preferred mode [web- or phone-based interactive voice response (IVR)]. Symptom summary reports were shared with providers during visits. Surveys were completed at 3 time points and assessed urinary, sexual, gastrointestinal, anxiety/depression, and sleep symptoms. Feasibility of enrollment and survey completion were calculated, and linear mixed effects models estimated differences in outcomes by race and time. RESULTS: Sixty three percent of study participants completed all PRO measures at all 3 time points. Black patients were more likely to select IVR as their survey mode (40% vs. 13%, P < 0.05), and less likely to complete all surveys (55% vs. 74%, Pâ¯=â¯0.13). Patients using IVR were also less likely to complete all surveys (41% vs. 69%, Pâ¯=â¯0.046). CONCLUSIONS: Reported preferences for survey mode and completion rates differ by race, which may influence survey completion rates and highlight potential obstacles for equitable implementation of PROs into clinical care.