Browsing by Author "Mendonca, Eneida A."
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Item A research agenda to support the development and implementation of genomics-based clinical informatics tools and resources(Oxford University Press, 2022) Wiley, Ken; Findley, Laura; Goldrich, Madison; Rakhra-Burris, Tejinder K.; Stevens, Ana; Williams, Pamela; Bult, Carol J.; Chisholm, Rex; Deverka, Patricia; Ginsburg, Geoffrey S.; Green, Eric D.; Jarvik, Gail; Mensah, George A.; Ramos, Erin; Relling, Mary V.; Roden, Dan M.; Rowley, Robb; Alterovitz, Gil; Aronson, Samuel; Bastarache, Lisa; Cimino, James J.; Crowgey, Erin L.; Del Fiol, Guilherme; Freimuth, Robert R.; Hoffman, Mark A.; Jeff, Janina; Johnson, Kevin; Kawamoto, Kensaku; Madhavan, Subha; Mendonca, Eneida A.; Ohno-Machado, Lucila; Pratap, Siddharth; Overby Taylor, Casey; Ritchie, Marylyn D.; Walton, Nephi; Weng, Chunhua; Zayas-Cabán, Teresa; Manolio, Teri A.; Williams, Marc S.; Pediatrics, School of MedicineObjective: The Genomic Medicine Working Group of the National Advisory Council for Human Genome Research virtually hosted its 13th genomic medicine meeting titled "Developing a Clinical Genomic Informatics Research Agenda". The meeting's goal was to articulate a research strategy to develop Genomics-based Clinical Informatics Tools and Resources (GCIT) to improve the detection, treatment, and reporting of genetic disorders in clinical settings. Materials and methods: Experts from government agencies, the private sector, and academia in genomic medicine and clinical informatics were invited to address the meeting's goals. Invitees were also asked to complete a survey to assess important considerations needed to develop a genomic-based clinical informatics research strategy. Results: Outcomes from the meeting included identifying short-term research needs, such as designing and implementing standards-based interfaces between laboratory information systems and electronic health records, as well as long-term projects, such as identifying and addressing barriers related to the establishment and implementation of genomic data exchange systems that, in turn, the research community could help address. Discussion: Discussions centered on identifying gaps and barriers that impede the use of GCIT in genomic medicine. Emergent themes from the meeting included developing an implementation science framework, defining a value proposition for all stakeholders, fostering engagement with patients and partners to develop applications under patient control, promoting the use of relevant clinical workflows in research, and lowering related barriers to regulatory processes. Another key theme was recognizing pervasive biases in data and information systems, algorithms, access, value, and knowledge repositories and identifying ways to resolve them.Item ASO Visual Abstract: Breast Cancer Screening, Diagnosis, and Surgery During the Pre- and Peri-pandemic—Experience of Patients in a Statewide Health Information Exchange(Springer, 2023) Milgrom, Zheng Z.; Milgrom, Daniel P.; Han, Yan; Hui, Siu L.; Haggstrom, David A.; Fisher, Carla S.; Mendonca, Eneida A.; Pediatrics, School of MedicineThe COVID-19 pandemic affected delivery of breast cancer care, including screening, diagnosis, and surgery. This study (https://doi.org/10.1245/s10434-023-13119-w) compared patient data from 1 year before the outbreak, during lockdown, and 1 year after lockdown to identify changes in patterns or timeliness of care.Item Breast Cancer Screening, Diagnosis, and Surgery during the Pre- and Peri-pandemic: Experience of Patients in a Statewide Health Information Exchange(Springer Nature, 2023) Milgrom, Zheng Z.; Milgrom, Daniel P.; Han, Yan; Hui, Siu L.; Haggstrom, David A.; Fisher, Carla S.; Mendonca, Eneida A.; Pediatrics, School of MedicineBackground: Measures taken to address the COVID-19 pandemic interrupted routine diagnosis and care for breast cancer. The aim of this study was to characterize the effects of the pandemic on breast cancer care in a statewide cohort. Patients and methods: Using data from a large health information exchange, we retrospectively analyzed the timing of breast cancer screening, and identified a cohort of newly diagnosed patients with any stage of breast cancer to further access the information available about their surgical treatments. We compared data for four subgroups: pre-lockdown (preLD) 25 March to 16 June 2019; lockdown (LD) 23 March to 3 May 2020; reopening (RO) 4 May to 14 June 2020; and post-lockdown (postLD) 22 March to 13 June 2021. Results: During LD and RO, screening mammograms in the cohort decreased by 96.3% and 36.2%, respectively. The overall breast cancer diagnosis and surgery volumes decreased up to 38.7%, and the median time to surgery was prolonged from 1.5 months to 2.4 for LD and 1.8 months for RO. Interestingly, higher mean DCIS diagnosis (5.0 per week vs. 3.1 per week, p < 0.05) and surgery volume (14.8 vs. 10.5, p < 0.05) were found for postLD compared with preLD, while median time to surgery was shorter (1.2 months vs. 1.5 months, p < 0.0001). However, the postLD average weekly screening and diagnostic mammogram did not fully recover to preLD levels (2055.3 vs. 2326.2, p < 0.05; 574.2 vs. 624.1, p < 0.05). Conclusions: Breast cancer diagnosis and treatment patterns were interrupted during the lockdown and still altered 1 year after. Screening in primary care should be expanded to mitigate possible longer-term effects of these interruptions.Item Building Cancer Control Capacity in Health Professionals Through Telementoring: A Survey Study of a Cancer Prevention and Survivorship Care ECHO Program(IOS Press, 2022) Milgrom, Zheng Z.; Severance, Tyler S.; Scanlon, Caitlin M.; Carson, Anyé T.; Vik, Terry A.; Duwve, Joan M.; Dixon, Brian E.; Mendonca, Eneida A.; Pediatrics, School of MedicineProject Extension for Community Healthcare Outcomes (Project ECHO©) was developed to democratize knowledge among health professionals in underserved communities. Evidence supporting the use of this model for cancer control is limited. Using surveys adapted from Moore’s evaluation framework, we evaluated the training outcomes of an ECHO program on cancer prevention and survivorship care. The study provides preliminary evidence that the ECHO model is a feasible way to build cancer control capacity among the healthcare workforce.Item Cancer prevention, screening, and survivorship ECHO: A pilot experience with an educational telehealth program(Wiley, 2022) Severance, Tyler S.; Milgrom, Zheng; Carson, Anyé; Scanlon, Caitlin M.; O’Brien, Rishika Chauhan; Anderson, Brent; Robertson, Mary; Janota, Andrea; Coven, Scott L.; Mendonca, Eneida A.; Duwve, Joan; Vik, Terry A.; Pediatrics, School of MedicineIntroduction: The American Cancer Society, Inc. (ACS) estimates that 37,940 Indiana residents were diagnosed with cancer in 2020, which remains the leading cause of death in the state. Across the cancer continuum, national goals have been established targeting recommended benchmarks for states in prevention, screening, treatment, and survivorship. Indiana consistently falls below most goals for each of these targeted categories. Methods: To address these disparities, we implemented Project ECHO (Extension for Community Healthcare Outcomes) as a virtual telehealth educational platform targeted at local healthcare providers. ECHO programs utilize a novel tele-mentoring approach to the education of clinicians in a hub/spoke design. Sessions occurred twice monthly from September 2019 to September 2020 and consisted of a traditional didactic lecture and a case-based discussion led by participating providers. Results: During the pilot year there were a total of 22 ECHO sessions with 140 different participants. On average, 15.5 spokes attended each session with increasing participation at the end of the year. Post-session surveys suggested generally favorable perception with 72% of respondents finding the quality "excellent." Discussion: Given the increasing rate of recurrent participation toward the end of the pilot year in conjunction with the favorable survey responses following each session, it was felt that the program was overall successful and warranted continued implementation. Conclusion: The Project ECHO platform is a validated telehealth education platform that has the potential to impact cancer care at multiple points along the cancer continuum at the regional level.Item Chromosome 17q12-21 Variants Are Associated with Multiple Wheezing Phenotypes in Childhood(American Thoracic Society, 2021) Hallmark, Brian; Wegienka, Ganesa; Havstad, Suzanne; Billheimer, Dean; Ownby, Dennis; Mendonca, Eneida A.; Gress, Lisa; Stern, Debra A.; Biagini Myers, Jocelyn; Khurana Hershey, Gurjit K.; Hoepner, Lori; Miller, Rachel L.; Lemanske, Robert F.; Jackson, Daniel J.; Gold, Diane R.; O’Connor, George T.; Nicolae, Dan L.; Gern, James E.; Ober, Carole; Wright, Anne L.; Martinez, Fernando D.; ECHO-CREW; Pediatrics, School of MedicineRationale: Birth cohort studies have identified several temporal patterns of wheezing, only some of which are associated with asthma. Whether 17q12-21 genetic variants, which are closely associated with asthma, are also associated with childhood wheezing phenotypes remains poorly explored. Objectives: To determine whether wheezing phenotypes, defined by latent class analysis (LCA), are associated with nine 17q12-21 SNPs and if so, whether these relationships differ by race/ancestry. Methods: Data from seven U.S. birth cohorts (n = 3,786) from the CREW (Children’s Respiratory Research and Environment Workgroup) were harmonized to represent whether subjects wheezed in each year of life from birth until age 11 years. LCA was then performed to identify wheeze phenotypes. Genetic associations between SNPs and wheeze phenotypes were assessed separately in European American (EA) (n = 1,308) and, for the first time, in African American (AA) (n = 620) children. Measurements and Main Results: The LCA best supported four latent classes of wheeze: infrequent, transient, late-onset, and persistent. Odds of belonging to any of the three wheezing classes (vs. infrequent) increased with the risk alleles for multiple SNPs in EA children. Only one SNP, rs2305480, showed increased odds of belonging to any wheezing class in both AA and EA children. Conclusions: These results indicate that 17q12-21 is a “wheezing locus,” and this association may reflect an early life susceptibility to respiratory viruses common to all wheezing children. Which children will have their symptoms remit or reoccur during childhood may be independent of the influence of rs2305480.Item Determinants of Long Immunization Clinic Wait Times in a Sub-Saharan African Country(Sage, 2021-06-29) Ekhaguere, Osayame Austine; Oluwafemi, Rosena Olubanke; Oyo-Ita, Angela; Mamlin, Burke; Bondich, Paul; Mendonca, Eneida A.; Rollins, Angela L.; Pediatrics, School of MedicineThe wait time clients spend during immunization clinic visits in low- and middle-income countries is a not well-understood reported barrier to vaccine completion. We used a prospective, observational design to document the total time from client arrival-to-discharge and all sequential provider-client activities in 1 urban, semi-urban, and rural immunization clinic in Nigeria. We also conducted caregiver and provider focus group discussions to identify perceived determinants of long clinic wait times. Our findings show that the time from arrival-to-discharge varied significantly by the clinic and ranged between 57 and 235 minutes, as did arrival-to-all providers-client activities. Focus group data attributed workflow delays to clinic staff waiting for a critical mass of clients to arrive for their immunization appointment before starting the essential health education talk or opening specific vaccine vials. Additionally, respondents indicated that complex documentation processes caused system delays. Research on clinic workflow transformation and simplification of immunization documentation is needed.Item Enhancing cancer prevention and survivorship care with a videoconferencing model for continuing education: a mixed-methods study to identify barriers and incentives to participation(Oxford University Press, 2022-02-12) Milgrom, Zheng Z.; Severance, Tyler S.; Scanlon, Caitlin M.; Carson, Anyé T.; Janota, Andrea D.; Burns, John L.; Vik, Terry A.; Duwve, Joan M.; Dixon, Brian E.; Mendonca, Eneida A.; Epidemiology, School of Public HealthObjective: To enhance cancer prevention and survivorship care by local health care providers, a school of public health introduced an innovative telelearning continuing education program using the Extension for Community Healthcare Outcomes (ECHO) model. In ECHO's hub and spoke structure, synchronous videoconferencing connects frontline health professionals at various locations ("spokes") with experts at the facilitation center ("hub"). Sessions include experts' didactic presentations and case discussions led by spoke site participants. The objective of this study was to gain a better understanding of the reasons individuals choose or decline to participate in the Cancer ECHO program and to identify incentives and barriers to doing so. Materials and methods: Study participants were recruited from the hub team, spoke site participants, and providers who attended another ECHO program but not this one. Participants chose to take a survey or be interviewed. The Consolidated Framework for Implementation Research guided qualitative data coding and analysis. Results: We conducted 22 semistructured interviews and collected 30 surveys. Incentives identified included the program's high-quality design, supportive learning climate, and access to information. Barriers included a lack of external incentives to participate and limited time available. Participants wanted more adaptability in program timing to fit providers' busy schedules. Conclusion: Although the merits of the Cancer ECHO program were widely acknowledged, adaptations to facilitate participation and emphasize the program's benefits may help overcome barriers to attending. As the number of telelearning programs grows, the results of this study point to ways to expand participation and spread health benefits more widely.Item An evaluation of an Extension for Community Healthcare Outcomes (ECHO) intervention in cancer prevention and survivorship care(BMC, 2022-05-17) Milgrom, Zheng Z.; Severance, Tyler S.; Scanlon, Caitlin M.; Carson, Anyé T.; Janota, Andrea D.; Vik, Terry A.; Duwve, Joan M.; Dixon, Brian E.; Mendonca, Eneida A.; Pediatrics, School of MedicineTo improve cancer care in Indiana, a telementoring program using the Extension for Community Healthcare Outcomes (ECHO) model was introduced in September 2019 to promote best-practice cancer prevention, screening, and survivorship care by primary care providers (PCPs). The aim of this study was to evaluate the program's educational outcomes in its pilot year, using Moore's Evaluation Framework for Continuing Medical Education and focusing on the program's impact on participants' knowledge, confidence, and professional practice. We collected data in 22 semi-structured interviews (13 PCPs and 9 non-PCPs) and 30 anonymous one-time surveys (14 PCPs and 16 non-PCPs) from the program participants (hub and spoke site members), as well as from members of the target audience who did not participate. In the first year, average attendance at each session was 2.5 PCPs and 12 non-PCP professionals. In spite of a relatively low PCP participation, the program received very positive satisfaction scores, and participants reported improvements in knowledge, confidence, and practice. Both program participants and target audience respondents particularly valued three features of the program: its conversational format, the real-life experiences gained, and the support received from a professional interdisciplinary community. PCPs reported preferring case discussions over didactics. Our results suggest that the Cancer ECHO program has benefits over other PCP-targetted cancer control interventions and could be an effective educational means of improving cancer control capacity among PCPs and others. Further study is warranted to explain the discrepancies among study participants' perceptions of the program's strengths and the relatively low PCP participation before undertaking a full-scale effectiveness study.Item Frequency and Correlates of Pediatric High-Flow Nasal Cannula Use for Bronchiolitis, Asthma, and Pneumonia(Daedalus Enterprises, 2022) Rogerson, Colin M.; Carroll, Aaron E.; Tu, Wanzhu; He, Tian; Schleyer, Titus K.; Rowan, Courtney M.; Owora, Arthur H.; Mendonca, Eneida A.; Pediatrics, School of MedicineBackground: Heated humidified high-flow nasal cannula (HFNC) is a respiratory support device historically used in pediatrics for infants with bronchiolitis. No large-scale analysis has determined the current frequency or demographic distribution of HFNC use in children. The objective of this study was to determine the frequency and correlates of HFNC use in children presenting to the hospital for asthma, bronchiolitis, or pneumonia. Methods: This longitudinal observational study was based on electronic health record data from a large regional health information exchange, the Indiana Network for Patient Care (INPC). Subjects were age 0-18 y with recorded hospital encounters at an INPC hospital between 2010-2019 with International Classification of Diseases codes for bronchiolitis, asthma, or pneumonia. Annual proportions of HFNC use among all hospital encounters were assessed using generalized additive models. Log-binomial regression models were used to identify correlates of incident HFNC use and determine risk ratios of specific subjects receiving HFNC. Results: The study sample included 242,381 unique subjects with 412,712 hospital encounters between 2010-2019. The 10-y period prevalence of HFNC use was 2.54% (6,155/242,381) involving 7,974 encounters. Hospital encounters utilizing HFNC increased by 400%, from 326 in 2010 to 1,310 in 2019. This increase was evenly distributed across all 3 diagnostic categories (bronchiolitis, asthma, and pneumonia). Sex, race, age, and ethnicity all significantly influenced the risk of HFNC use. Over the 10-y period, the percentage of all hospital encounters using HFNC increased from 1.11% in 2010 to 3.15% in 2018. Subjects with multiple diagnoses had significantly higher risk of receiving HFNC. Conclusions: The use of HFNC in children presenting to the hospital with common respiratory diseases has increased substantially over the past decade and is no longer confined to treating infants with bronchiolitis. Demographic and diagnostic factors significantly influenced the frequency of HFNC use.