Clinical Decision Support for Surgery: A Mixed Methods Study on Design and Implementation Perspectives From Urologists.

OBJECTIVE: To assess urologist attitudes toward clinical decision support (CDS) embedded into the electronic health record (EHR) and define design needs to facilitate implementation and impact. With recent advances in big data and artificial intelligence (AI), enthusiasm for personalized, data-driven tools to improve surgical decision-making has grown, but the impact of current tools remains limited. METHODS: A sequential explanatory mixed methods study from 2019 to 2020 was performed. First, survey responses from the 2019 American Urological Association Annual Census evaluated attitudes toward an automatic CDS tool that would display risk/benefit data. This was followed by the purposeful sampling of 25 urologists and qualitative interviews assessing perspectives on CDS impact and design needs. Bivariable, multivariable, and coding-based thematic analysis were applied and integrated. RESULTS: Among a weighted sample of 12,366 practicing urologists, the majority agreed CDS would help decision-making (70.9%, 95% CI 68.7%-73.2%), aid patient counseling (78.5%, 95% CI 76.5%-80.5%), save time (58.1%, 95% CI 55.7%-60.5%), and improve patient outcomes (42.9%, 95% CI 40.5%-45.4%). More years in practice was negatively associated with agreement (P <.001). Urologists described how CDS could bolster evidence-based care, personalized medicine, resource utilization, and patient experience. They also identified multiple implementation barriers and provided suggestions on form, functionality, and visual design to improve usefulness and ease of use. CONCLUSION: Urologists have favorable attitudes toward the potential for clinical decision support in the EHR. Smart design will be critical to ensure effective implementation and impact.

Electronic Health Record Use and Perceptions among Urologic Surgeons.

OBJECTIVE: Electronic health records (EHRs) have become widely adopted with increasing emphasis on improving care delivery. Improvements in surgery may be limited by specialty-specific issues that impact EHR usability and engagement. Accordingly, we examined EHR use and perceptions in urology, a diverse surgical specialty. METHODS: We conducted a national, sequential explanatory mixed methods study. Through the 2019 American Urological Association Census, we surveyed urologic surgeons on EHR use and perceptions and then identified associated characteristics through bivariable and multivariable analyses. Using purposeful sampling, we interviewed 25 urologists and applied coding-based thematic analysis, which was then integrated with survey findings. RESULTS: Among 2,159 practicing urologic surgeons, 2,081 (96.4%) reported using an EHR. In the weighted sample (n = 12,366), over 90% used the EHR for charting, viewing results, and order entry with most using information exchange functions (59.0-79.6%). In contrast, only 35.8% felt the EHR increases clinical efficiency, whereas 43.1% agreed it improves patient care, which related thematically to information management, administrative burden, patient safety, and patient-surgeon interaction. Quantitatively and qualitatively, use and perceptions differed by years in practice and practice type with more use and better perceptions among more recent entrants into the urologic workforce and those in academic/multispecialty practices, who may have earlier EHR exposure, better infrastructure, and more support. CONCLUSION: Despite wide and substantive usage, EHRs engender mixed feelings, especially among longer-practicing surgeons and those in lower-resourced settings (e.g., smaller and private practices). Beyond reducing administrative burden and simplifying information management, efforts to improve care delivery through the EHR should focus on surgeon engagement, particularly in the community, to boost implementation and user experience.

Incidental Radiology Findings on Computed Tomography Studies in Emergency Department Patients: A Systematic Review and Meta-Analysis.

STUDY OBJECTIVE: An incidental finding is defined as a newly discovered mass or lesion detected on imaging performed for an unrelated reason. The identification of an incidental finding may be an opportunity for the early detection of a serious medical condition, including a malignancy. However, little is known about the prevalence of incidental findings in the emergency department (ED) setting and the strategies that can be used to mitigate the risk associated with them in the ED. This study aimed to estimate the overall prevalence of incidental findings and to summarize the currently described measures to mitigate the risks associated with incidental findings. METHODS: On November 22, 2020, a systematic literature search of PubMed, EMBASE, and Scopus was performed for studies that were published in peer-reviewed journals and reported the prevalence of incidental findings in computed tomography (CT) scans in patients in the ED. Patients who received CT scans that included the head, neck, chest, or abdomen/pelvis were included. The study characteristics, overall prevalence of incidental findings, prevalence of incidental findings by body region, and prespecified subgroups were extracted. The criteria used for risk stratification within individual studies were also extracted. Pooled estimates were calculated using a random-effects meta-analysis. RESULTS: A total of 1,385 studies were identified, and 69 studies met the inclusion criteria. The included studies represented 147,763 ED encounters or radiology reports across 16 countries, and 83% of studies were observational, cross-sectional studies. A total of 35 studies (50.7%) were in trauma patients. A large degree of heterogeneity was observed across the included studies. The overall pooled prevalence estimate for any incidental finding was 31.3% (95% confidence interval 24.4% to 39.1%). We found great variation in the methods described to mitigate the risk associated with incidental findings, including a lack of standardized risk stratification, inconsistent documentation practices, and only a small subset of studies describing prospective interventions aimed at improving the recognition and management of incidental findings from the ED. CONCLUSION: In patients in the ED receiving CT scans, incidental findings are commonly encountered across a broad range of ED chief complaints. This review highlights the existence of great heterogeneity in the definitions used to classify incidental findings. Future studies are needed to determine a clinically feasible categorization standard or terminology for commonly encountered incidental findings in the ED setting to standardize classification and documentation.

Electronic patient-reported outcomes monitoring during lung cancer chemotherapy: A nested cohort within the PRO-TECT pragmatic trial (AFT-39).

OBJECTIVES: Patients with lung cancer have high symptom burden and diminished quality of life. Electronic patient-reported outcome (PRO) platforms deliver repeated longitudinal surveys via web or telephone to patients and alert clinicians about concerning symptoms. This study aims to determine feasibility of electronic PRO monitoring in lung cancer patients receiving treatment in community settings. METHODS: Adults receiving treatment for advanced or metastatic lung cancer at 26 community sites were invited to participate in a prospective trial of weekly electronic PRO symptom monitoring for 12 months (NCT03249090). Surveys assessing patients' satisfaction with the electronic PRO system were administered at 3 months. Descriptive statistics were generated for demographics, survey completion rates, symptom occurrence, and provider PRO alert management approaches. Pairwise relationships between symptom items were evaluated using intra-individual repeated-measures correlation coefficients. RESULTS: Lung cancer patients (n = 118) participating in electronic PROs were older (mean 64.4 vs 61.9 years, p = 0.03), had worse performance status (p = 0.002), more comorbidities (p = 0.02), and less technology experience than patients with other cancers. Of delivered weekly PRO surveys over 12 months, 91% were completed. Nearly all (97%) patients reported concerning (i.e., severe or worsening) symptoms during participation, with 33% of surveys including concerning symptoms. Pain was the most frequent and longest lasting symptom and was associated with reduced activity level. More than half of alerts to clinicians for concerning symptoms led to intervention. The majority (87%) would recommend using electronic PRO monitoring to other lung cancer patients. CONCLUSIONS: Remote longitudinal weekly monitoring of patients with lung cancer using validated electronic PRO surveys was feasible in a multicenter, community-based pragmatic study. A high symptom burden specific to lung cancer was detected and clinician outreach in response to alerts was frequent, suggesting electronic PROs may be a beneficial strategy for identifying actionable symptoms and allow opportunities to optimize well-being in this population.

Health information technology to support cancer survivorship care planning: A systematic review.

OBJECTIVE: The study sought to conduct a systematic review to explore the functions utilized by electronic cancer survivorship care planning interventions and assess their effects on patient and provider outcomes. MATERIALS AND METHODS: Based on PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) guidelines, studies published from January 2000 to January 2020 were identified in PubMed, CINAHL, EMBASE, PsychINFO, Scopus, Web of Science, and the ACM Digital Library . The search combined terms for cancer, survivorship, care planning, and health information technology (HIT). Eligible studies evaluated the effects of a HIT intervention on usability, knowledge, process, or health-related outcomes. A total of 578 abstracts were reviewed, resulting in 60 manuscripts describing 40 studies. Thematic analyses were used to define meta-themes of system functions, and Fisher's exact tests were used to examine associations between functions and outcomes. RESULTS: Patients were the target end users for 18 interventions, while 12 targeted providers and 10 targeted both groups. Interventions used patient-reported outcomes collection (60%), automated content generation (58%), electronic sharing (40%), persistent engagement (28%), and communication features (20%). Overall, interventions decreased the time to create survivorship care plans (SCPs) and supported care planning knowledge and abilities, but results were mixed for effects on healthcare utilization, SCP sharing, and provoking anxiety. Persistent engagement features were associated with improvements in health or quality-of-life outcomes (17 studies, P = .003). CONCLUSIONS: Features that engaged users persistently over time were associated with better health and quality-of-life outcomes. Most systems have not capitalized on the potential of HIT to share SCPs across a care team and support care coordination.

Racial differences in user experiences and perceived value of electronic symptom monitoring in a cohort of black and white bladder and prostate cancer patients.

PURPOSE: Electronic patient-reported outcomes (ePROs) are increasingly being used for symptom monitoring during routine cancer care, but have rarely been evaluated in diverse patient populations. We assessed ePRO user experiences and perceived value among Black and White cancer patients. METHODS: We recruited 30 Black and 49 White bladder and prostate cancer patients from a single institution. Participants reported symptoms using either a web-based or automated telephone interface over 3 months and completed satisfaction surveys and qualitative interviews focused on user experiences and value. Using a narrative mixed methods approach, we evaluated overall and race-specific differences in ePRO user experiences and perceived value. RESULTS: Most participants selected the web-based system, but Blacks were more likely to use the automated telephone-based system than Whites. In satisfaction surveys, Whites more commonly reported ease in understanding and reporting symptoms compared with Blacks. Blacks more often reported that the ePRO system was helpful in facilitating symptom-related discussions with clinicians. During interviews, Blacks described how the ePRO helped them recognize symptoms, while Whites found value in better understanding and tracking symptoms longitudinally. Blacks also expressed preferences for paper-based ePRO options due to perceived ease in better understanding of symptom items. CONCLUSION: Electronic patient-reported outcomes are perceived as valuable for variable reasons by Black and White cancer populations, with greater perceived value for communicating with clinicians reported among Blacks. To optimize equitable uptake of ePROs, oncology practices should offer several ePRO options (e.g., web-based, phone-based), as well as paper-based options, and consider the e-health literacy needs of patients during implementation.

Feasibility and delivery of patient-reported outcomes in clinical practice among racially diverse bladder and prostate cancer patients.

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 (n = 29 Black and n = 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%, P = 0.13). Patients using IVR were also less likely to complete all surveys (41% vs. 69%, P = 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.

From Patient Engagement to Precision Oncology: Leveraging Informatics to Advance Cancer Care.

OBJECTIVES: Conduct a survey of the literature for advancements in cancer informatics over the last three years in three specific areas where there has been unprecedented growth: 1) digital health; 2) machine learning; and 3) precision oncology. We also highlight the ethical implications and future opportunities within each area. METHODS: A search was conducted over a three-year period in two electronic databases (PubMed, Google Scholar) to identify peer-reviewed articles and conference proceedings. Search terms included variations of the following: neoplasms[MeSH], informatics[MeSH], cancer, oncology, clinical cancer informatics, medical cancer informatics. The search returned too many articles for practical review (23,994 from PubMed and 23,100 from Google Scholar). Thus, we conducted searches of key PubMed-indexed informatics journals and proceedings. We further limited our search to manuscripts that demonstrated a clear focus on clinical or translational cancer informatics. Manuscripts were then selected based on their methodological rigor, scientific impact, innovation, and contribution towards cancer informatics as a field or on their impact on cancer care and research. RESULTS: Key developments and opportunities in cancer informatics research in the areas of digital health, machine learning, and precision oncology were summarized. CONCLUSION: While there are numerous innovations in the field of cancer informatics to advance prevention and clinical care, considerable challenges remain related to data sharing and privacy, digital accessibility, and algorithm biases and interpretation. The implementation and application of these findings in cancer care necessitates further consideration and research.

Performance Measures Based on How Adults With Cancer Feel and Function: Stakeholder Recommendations and Feasibility Testing in Six Cancer Centers.

PURPOSE: Patient-reported outcome measures (PROMs) that assess how patients feel and function have potential for evaluating quality of care. Stakeholder recommendations for PRO-based performance measures (PMs) were elicited, and feasibility testing was conducted at six cancer centers. METHODS: Interviews were conducted with 124 stakeholders to determine priority symptoms and risk adjustment variables for PRO-PMs and perceived acceptability. Stakeholders included patients and advocates, caregivers, clinicians, administrators, and thought leaders. Feasibility testing was conducted in six cancer centers. Patients completed PROMs at home 5-15 days into a chemotherapy cycle. Feasibility was operationalized as ≥ 75% completed PROMs and ≥ 75% patient acceptability. RESULTS: Stakeholder priority PRO-PMs for systemic therapy were GI symptoms (diarrhea, constipation, nausea, vomiting), depression/anxiety, pain, insomnia, fatigue, dyspnea, physical function, and neuropathy. Recommended risk adjusters included demographics, insurance type, cancer type, comorbidities, emetic risk, and difficulty paying bills. In feasibility testing, 653 patients enrolled (approximately 110 per site), and 607 (93%) completed PROMs, which indicated high feasibility for home collection. The majority of patients (470 of 607; 77%) completed PROMs without a reminder call, and 137 (23%) of 607 completed them after a reminder call. Most patients (72%) completed PROMs through web, 17% paper, or 2% interactive voice response (automated call that verbally asked patient questions). For acceptability, > 95% of patients found PROM items to be easy to understand and complete. CONCLUSION: Clinicians, patients, and other stakeholders agree that PMs that are based on how patients feel and function would be an important addition to quality measurement. This study also shows that PRO-PMs can be feasibly captured at home during systemic therapy and are acceptable to patients. PRO-PMs may add value to the portfolio of PMs as oncology transitions from fee-for-service payment models to performance-based care that emphasizes outcome measures.

Patient free text reporting of symptomatic adverse events in cancer clinical research using the National Cancer Institute's Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE).

OBJECTIVE: The study sought to describe patient-entered supplemental information on symptomatic adverse events (AEs) in cancer clinical research reported via a National Cancer Institute software system and examine the feasibility of mapping these entries to established terminologies. MATERIALS AND METHODS: Patients in 3 multicenter trials electronically completed surveys during cancer treatment. Each survey included a prespecified subset of items from the National Cancer Institute's Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). Upon completion of the survey items, patients could add supplemental symptomatic AE information in a free text box. As patients typed into the box, structured dropdown terms could be selected from the PRO-CTCAE item library or Medical Dictionary for Regulatory Activities (MedDRA), or patients could type unstructured free text for submission. RESULTS: Data were pooled from 1760 participants (48% women; 78% White) who completed 8892 surveys, of which 2387 (26.8%) included supplemental symptomatic AE information. Overall, 1024 (58%) patients entered supplemental information at least once, with an average of 2.3 per patient per study. This encompassed 1474 of 8892 (16.6%) dropdowns and 913 of 8892 (10.3%) unstructured free text entries. One-third of the unstructured free text entries (32%) could be mapped post hoc to a PRO-CTCAE term and 68% to a MedDRA term. DISCUSSION: Participants frequently added supplemental information beyond study-specific survey items. Almost half selected a structured dropdown term, although many opted to submit unstructured free text entries. Most free text entries could be mapped post hoc to PRO-CTCAE or MedDRA terms, suggesting opportunities to enhance the system to perform real-time mapping for AE reporting. CONCLUSIONS: Patient reporting of symptomatic AEs using a text box functionality with mapping to existing terminologies is both feasible and informative.

Health Tracking and Information Sharing in the Patient-Centered Era: A Health Information National Trends Survey (HINTS) Study.

We examined the current state of digital health tracking and information sharing with health professionals among patients with chronic conditions using data from the National Cancer Institute's 2018 Health Information National Trends Survey (HINTS). Descriptive statistics were used to examine the characteristics of health tracking and information sharing, Chi-squared tests were used to compare across groups, and multivariate logistic regression models were used to control for covariates. Between 17.4-37.6% of respondents reported sharing information with a health professional through either e-mail, monitoring device, text message, or online medical record message. There were sociodemographic differences across health tracking and information sharing modalities, and patients with chronic conditions disproportionately lacked Internet access, a basic cell phone, smartphone, or tablet compared to those without chronic conditions (p<0.05). This suggests there are sociodemographic and technology-based disparities for health tracking and information sharing for patients with chronic conditions.

Crohn's and Colitis Foundation of America Partners Patient-Powered Research Network: Patient Perspectives on Facilitators and Barriers to Building an Impactful Patient-Powered Research Network.

BACKGROUND: To build a Patient-Powered Research Networks (PPRN) that prioritizes the needs of its members who have inflammatory bowel diseases (IBD), we sought to better understand patients' preferences for what are the essential features that will facilitate and sustain engagement. METHODS: We conducted a two-phase qualitative study. Seven focus groups involving 62 participants with IBD were conducted (phase 1). Focus group results informed the phase 2 cognitive interviews, which included 13 phone interviews. Topics included experiences with IBD and research, PPRN engagement, patient-generated health data, and resources/tools to facilitate self-management. All focus groups and interviews were digitally recorded, transcribed verbatim, and analyzed in ATLAS.ti 7.5. Thematic categories were derived from the data, and codes were grouped into emergent themes and relationships. RESULTS: Four major themes emerged through inductive coding: (1) the impact of knowing; (2) participation barriers and challenges; (3) engagement and collaboration; and (4) customizable patient portal features/functionalities. Participants were motivated to participate in the PPRN because the knowledge gained from research studies would benefit both society and the individual. Main concerns included credibility of online resources, pharmaceutical industry profiting from their data, data security, and participation expectations. Participants wanted a true and equal partnership in every phase of building a PPRN. Participants felt it was important to have access to personal health records and be able to track health status and symptoms. CONCLUSION: Partnering with participants throughout PPRN development was critical to understanding the needs and preferences of patients with IBDs and for shaping engagement strategies and the portal's design.

Software for Administering the National Cancer Institute's Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events: Usability Study.

BACKGROUND: The US National Cancer Institute (NCI) developed software to gather symptomatic adverse events directly from patients participating in clinical trials. The software administers surveys to patients using items from the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) through Web-based or automated telephone interfaces and facilitates the management of survey administration and the resultant data by professionals (clinicians and research associates). OBJECTIVE: The purpose of this study was to iteratively evaluate and improve the usability of the PRO-CTCAE software. METHODS: Heuristic evaluation of the software functionality was followed by semiscripted, think-aloud protocols in two consecutive rounds of usability testing among patients with cancer, clinicians, and research associates at 3 cancer centers. We conducted testing with patients both in clinics and at home (remotely) for both Web-based and telephone interfaces. Furthermore, we refined the software between rounds and retested. RESULTS: Heuristic evaluation identified deviations from the best practices across 10 standardized categories, which informed initial software improvement. Subsequently, we conducted user-based testing among 169 patients and 47 professionals. Software modifications between rounds addressed identified issues, including difficulty using radio buttons, absence of survey progress indicators, and login problems (for patients) as well as scheduling of patient surveys (for professionals). The initial System Usability Scale (SUS) score for the patient Web-based interface was 86 and 82 (P=.22) before and after modifications, respectively, whereas the task completion score was 4.47, which improved to 4.58 (P=.39) after modifications. Following modifications for professional users, the SUS scores improved from 71 to 75 (P=.47), and the mean task performance improved significantly (4.40 vs 4.02; P=.001). CONCLUSIONS: Software modifications, informed by rigorous assessment, rendered a usable system, which is currently used in multiple NCI-sponsored multicenter cancer clinical trials. TRIAL REGISTRATION: ClinicalTrials.gov NCT01031641; https://clinicaltrials.gov/ct2/show/NCT01031641 (Archived by WebCite at http://www.webcitation.org/708hTjlTl).

Using Technology to Improve Cancer Care: Social Media, Wearables, and Electronic Health Records.

Digital engagement has become pervasive in the delivery of cancer care. Internet- and cellular phone-based tools and systems are allowing large groups of people to engage with each other and share information. Health systems and individual health professionals are adapting to this revolution in consumer and patient behavior by developing ways to incorporate the benefits of technology for the purpose of improving the quality of medical care. One example is the use of social media platforms by oncologists to foster interaction with each other and to participate with the lay public in dialogue about science, medicine, and cancer care. In addition, consumer devices and sensors (wearables) have provided a new, growing dimension of digital engagement and another layer of patient-generated health data to foster better care and research. Finally, electronic health records have become the new standard for oncology care delivery, bringing new opportunities to measure quality in real time and follow practice patterns, as well as new challenges as providers and patients seek ways to integrate this technology along with other forms of digital engagement to produce more satisfaction in the process of care along with measurably better outcomes.

Harnessing person-generated health data to accelerate patient-centered outcomes research: the Crohn's and Colitis Foundation of America PCORnet Patient Powered Research Network (CCFA Partners).

The Crohn's and Colitis Foundation of America Partners Patient-Powered Research Network (PPRN) seeks to advance and accelerate comparative effectiveness and translational research in inflammatory bowel diseases (IBDs). Our IBD-focused PCORnet PPRN has been designed to overcome the major obstacles that have limited patient-centered outcomes research in IBD by providing the technical infrastructure, patient governance, and patient-driven functionality needed to: 1) identify, prioritize, and undertake a patient-centered research agenda through sharing person-generated health data; 2) develop and test patient and provider-focused tools that utilize individual patient data to improve health behaviors and inform health care decisions and, ultimately, outcomes; and 3) rapidly disseminate new knowledge to patients, enabling them to improve their health. The Crohn's and Colitis Foundation of America Partners PPRN has fostered the development of a community of citizen scientists in IBD; created a portal that will recruit, retain, and engage members and encourage partnerships with external scientists; and produced an efficient infrastructure for identifying, screening, and contacting network members for participation in research.

Physical activity and BMI in a nationally representative sample of children and adolescents.

OBJECTIVE: To examine objectively measured physical activity levels by age, sex, and BMI for children and adolescents in a nationally representative sample. METHODS: Data were from the 2003-2004 and 2005-2006 National Health and Nutrition Examination Surveys, which included physical activity assessment by accelerometer and measured height and weight. The authors calculated minutes of moderate and vigorous activity. RESULTS: Boys were more active than girls, and activity levels were lower at older ages. Younger children met daily recommendations for physical activity, whereas older children, especially girls, did not. Typically, weight status was inversely related to activity, though differences were less apparent among boys. Underweight children were not always more active than heavier peers.