C36. HOT TOPICS IN BEHAVIORAL SCIENCES AND HEALTH SERVICES RESEARCH最新文献

{"title":"Development of a Comprehensive, Integrated Patient Data Repository of US Pulmonary Arterial Hypertension (PAH) Patients to Assess the Impact of Clinical Care on Patient Outcomes","authors":"H. Farber, S. Milligan, S. Panjabi, Y. Tsang, K. Bettencourt, M. Cho","doi":"10.1164/ajrccm-conference.2022.205.1_meetingabstracts.a3997","DOIUrl":"https://doi.org/10.1164/ajrccm-conference.2022.205.1_meetingabstracts.a3997","url":null,"abstract":"RATIONALE: Advances in PAH management and well-established treatment guidelines have improved the prognosis for patients. However, the extent to which guidelines are implemented in real-world practice and the relationship between guidelines and real-world patient outcomes remain in question. To assess real-world treatment and outcomes, a new type of comprehensive, integrated patient data repository (CIPDR) was created. Here, we describe the process to create this repository to enable interpretation of the collected data. METHODS: The TRIO CIPDR was created with guidance from six pulmonologists who have experience in design of and/or participation in PH registries (e.g. REVEAL). The CIPDR includes data elements of demographics, disease, comorbidities, laboratory data, pulmonary function testing, functional status, PAH treatment, reasons for treatment discontinuation/switch, hospitalizations, and death, which are collected through HIPAA-secure online forms. To minimize entry errors, participating sites received form training and ongoing support, and each form contained logic to identify improbable entries. All data were deidentified prior to storage in secure, redundant servers. The site engagement, data collection forms, data storage, and data output processes were all designed to allow both retrospective and prospective data collection and for near-immediate repository expansion through addition of other PAH-treating centers. Eleven Pulmonary Hypertension Association-certified care centers initially contributed to the CIPDR though two centers were unable to continue participation due to COVID19 impact. Central IRB approval was obtained though many sites independently received approval for the repository protocol by their IRBs. To facilitate enrollment, specialty pharmacy data corresponding to each site were used to identify potential patients and pre-populate qualification forms. Each site reviewed and qualified patients who met repository criteria: age >18 years, prescribed PAH-specific medications, and confirmation of PAH diagnosis by right heart catheterization (mean Pulmonary Arterial Pressure ≥25mmHg, Pulmonary Capillary Wedge Pressure ≤15 mmHg, and Pulmonary Vascular Resistance ≥3.0 Wood Units at rest). The initial data collection included care encounters between Jan 2019 and Dec 2020 and data concerning diagnosis, onset of symptoms, procedures, and laboratory values closest to enrollment. After completion of data collection, all data were reviewed by Trio Health and adjudicated with each site. RESULTS: Of 3200 patients identified as potentially qualified, 1009 were initially enrolled and their retrospective data encompassing 4489 visits collected. Descriptive measures of the repository are presented in the TABLE. CONCLUSION: The Trio CIPDR is an important step forward to uniquely characterize the patient journey ,treatment patterns, and outcomes for patients with PAH.","PeriodicalId":262892,"journal":{"name":"C36. HOT TOPICS IN BEHAVIORAL SCIENCES AND HEALTH SERVICES RESEARCH","volume":"19 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"115266314","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"\"It's a Cause I Believe In\": Factors Influencing Participation and Engagement in Longitudinal, Respiratory-Focused Research Studies","authors":"A. Synn, K. Menson, M. Carnethon, A. Dixon, R. Kalhan, M. Krishnan, E. Sugar, G. Washko, R. Wise, M. Eakin, the ALA Lung Health Cohort Investigators","doi":"10.1164/ajrccm-conference.2022.205.1_meetingabstracts.a3987","DOIUrl":"https://doi.org/10.1164/ajrccm-conference.2022.205.1_meetingabstracts.a3987","url":null,"abstract":"","PeriodicalId":262892,"journal":{"name":"C36. HOT TOPICS IN BEHAVIORAL SCIENCES AND HEALTH SERVICES RESEARCH","volume":"49 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"123049367","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Australia and New Zealand Interstitial Lung Disease Registry (ANZ ILD) 2021 Update - Progress During the Pandemic","authors":"I. Moore, J. Wrobel, D. Jackson, J. Mackintosh, I. Glaspole, C. Grainge, M. Wilsher, F. Thien, D. Chambers, N. Goh, A. Edwards, H. Gallagher, B. Kwan, E. Veitch, G. Keir, T. Corte, on behalf of the AILDR Steering Committee","doi":"10.1164/ajrccm-conference.2022.205.1_meetingabstracts.a3994","DOIUrl":"https://doi.org/10.1164/ajrccm-conference.2022.205.1_meetingabstracts.a3994","url":null,"abstract":"Introduction/Aim: Interstitial lung disease (ILD) comprises a heterogeneous group of diseases affecting the lung interstitium associated with significant morbidity and mortality. The Australasian Interstitial Lung Disease Registry (AILDR) launched in 2016 with concurrent aims to: (a) provide a valuable resource for high quality ILD research to further understanding of ILD and (b) improve care for ILD patients across Australia and NZ. Methods: Consecutive ILD patients attending 16 registered ILD centres across Australia and NZ are eligible to enrol in the AILDR. Comprehensive data including demographics, ILD diagnosis, objective functional markers (baseline and subsequent tests) and treatment parameters are collected and stored on a secure online platform. We report data from the AILDR since initiation in May 2016 to 30 September 2021 inclusive. Results: In total 2140 participants were enrolled from 16 sites at a mean rate of 43/month (mean age 65.8 ± 13.3 years;1185 (55.4%) male;982 (45.9%) eversmokers;mean BMI 29.4 ± 5.9 kg/m2). Baseline functional parameters demonstrated mean FVC 85.6 ± 21.7% predicted, mean DLCO 60.5 ± 19.4% predicted, and mean 6-min walk test (6MWT) distance 434.3 ± 126.5 m. ILD diagnoses included: idiopathic pulmonary fibrosis (IPF) n = 545 (30.3%), connective tissue disease associated ILD (CTD-ILD) n = 326 (18.1%), chronic hypersensitivity pneumonitis (CHP) n = 155 (8.6%), sarcoidosis n = 120 (6.7%) and unclassifiable ILD n = 190 (10.6%). Patients with IPF were more likely to be male and older compared to all other ILD subtypes (p < 0.001). Baseline functional parameters were lowest for those with CHP, significantly lower comparable to the IPF group (p < 0.001). Highest baseline functional parameters were observed in those with sarcoidosis. Mortality data demonstrated a cumulative rate of death in year one, two, three and four of 8%, 15%, 25% and 44%, respectively. Conclusion: We demonstrate the feasibility of a bi-national ILD registry evidenced by steady recruitment despite the COVID-19 pandemic. Through a routine approach across Australasia, the AILDR aims to improve standardization of diagnosis and management of ILD patients.","PeriodicalId":262892,"journal":{"name":"C36. HOT TOPICS IN BEHAVIORAL SCIENCES AND HEALTH SERVICES RESEARCH","volume":"39 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"115809335","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Impact of an Integrated Specialty Pharmacy in an Otolaryngology Clinic at a Large, Urban Academic Medical Center","authors":"S. Rotolo, A. Naserallah, M. G. Macías, E. Coogan, M. Lach, A. M. Leslie, J. M. Pinto","doi":"10.1164/ajrccm-conference.2022.205.1_meetingabstracts.a3993","DOIUrl":"https://doi.org/10.1164/ajrccm-conference.2022.205.1_meetingabstracts.a3993","url":null,"abstract":"","PeriodicalId":262892,"journal":{"name":"C36. HOT TOPICS IN BEHAVIORAL SCIENCES AND HEALTH SERVICES RESEARCH","volume":"4 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"132976390","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Hemoptysis Associated with Sexual Activity in Lymphangioleiomyomatosis","authors":"R. Rubin, B. Shaw, E. Kopras, F. McCormack, N. Gupta","doi":"10.1164/ajrccm-conference.2022.205.1_meetingabstracts.a3996","DOIUrl":"https://doi.org/10.1164/ajrccm-conference.2022.205.1_meetingabstracts.a3996","url":null,"abstract":"","PeriodicalId":262892,"journal":{"name":"C36. HOT TOPICS IN BEHAVIORAL SCIENCES AND HEALTH SERVICES RESEARCH","volume":"235 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"132942407","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patient Compliance with Venous Thromboembolism Prophylaxis in the Inpatient Setting: Comparison of Enoxaparin versus Heparin Subcutaneous","authors":"A. S. Saini, K. Shayani, H.C. Meng","doi":"10.1164/ajrccm-conference.2022.205.1_meetingabstracts.a3999","DOIUrl":"https://doi.org/10.1164/ajrccm-conference.2022.205.1_meetingabstracts.a3999","url":null,"abstract":"","PeriodicalId":262892,"journal":{"name":"C36. HOT TOPICS IN BEHAVIORAL SCIENCES AND HEALTH SERVICES RESEARCH","volume":"45 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"130965861","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Patient Journey in Patients with CRSwNP in the United States and Europe","authors":"J. Hwee, S.G. Smith, M. Small, L. Lee, S. Yang","doi":"10.1164/ajrccm-conference.2022.205.1_meetingabstracts.a3992","DOIUrl":"https://doi.org/10.1164/ajrccm-conference.2022.205.1_meetingabstracts.a3992","url":null,"abstract":"","PeriodicalId":262892,"journal":{"name":"C36. HOT TOPICS IN BEHAVIORAL SCIENCES AND HEALTH SERVICES RESEARCH","volume":"11 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"121994179","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Respiratory Airflow Estimation Using Tracheal Sounds and Motion","authors":"N. Montazeri Ghahjaverestan, W. Fan, C. Aguiar, J. Yu, D. Bradley","doi":"10.1164/ajrccm-conference.2022.205.1_meetingabstracts.a3991","DOIUrl":"https://doi.org/10.1164/ajrccm-conference.2022.205.1_meetingabstracts.a3991","url":null,"abstract":"","PeriodicalId":262892,"journal":{"name":"C36. HOT TOPICS IN BEHAVIORAL SCIENCES AND HEALTH SERVICES RESEARCH","volume":"22 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"126228624","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Trends in Pediatric Hypoxia Altitude Simulation Testing (HAST): Data from a Pediatric Referral Center","authors":"L. Caldarone, K. Massa, S. Padma Rani, A. Strang","doi":"10.1164/ajrccm-conference.2022.205.1_meetingabstracts.a3989","DOIUrl":"https://doi.org/10.1164/ajrccm-conference.2022.205.1_meetingabstracts.a3989","url":null,"abstract":"Rationale: Hypoxia altitude simulation tests (HASTs) simulate changes in physiology that occur during commercial air flight (FiO2 16% in cabin pressurized to 8,000 ft) and help identify patients who may need additional respiratory support during flight. There is a paucity of literature regarding pediatric HAST studies. The purpose of this study is to identify patient characteristics, indications, and results of HAST studies at a pediatric tertiary care referral center. Methods: This IRB-exempt, retrospective chart review examined HAST studies over 5 years (2017-2021) at Nemours Children's Hospital (Wilmington, Delaware, USA). HAST studies were performed by respiratory therapists, supervised by pulmonologists, in the PFT laboratory. Standard protocol for the studies was performed including administration of 16% oxygen while monitoring SpO2 and heart rate for 10 minutes and administration of supplemental oxygen as indicated. Patient information collected included: demographic and anthropometric data, primary indication for HAST, baseline respiratory support, co-morbidities, reported prior difficulty with air travel, and results. Descriptive statistics were calculated. Results: 22 studies were ordered, and 12 were completed. Characteristics of patients who completed testing (N=12) are as follows: Mean age 77.0 (range 1.4-216) months, mean weight 21.7 kg, 58% male, 75% white, 8.3% with baseline tracheostomy/ventilatordependence, and 16.7% with baseline supplemental oxygen dependence. 25% reported history of difficulty with air flight. The most common primary indications included chronic lung disease of prematurity (41.7%), followed by restrictive lung disease (50%), followed by sickle cell disease (8.3%). Of the 12 patients who completed testing, 4 had abnormal results. Of those, the mean age was 45.6 months, mean weight 12.6 kg, 75% were male, and 50% on supplemental oxygen at baseline. The most common indications were chronic lung disease of prematurity (50%) followed by restrictive lung disease (50%). The most common co-morbidity was asthma (75%). See Table 1. Compared to patients who had normal results, patients with abnormal testing had a greater change in SpO2 (10.8 vs 4.9%) with lower mean SpO2 nadir of 87% compared to 93.6%. Discussion: The most common indications for HAST studies in this pediatric study include chronic lung disease of prematurity, restrictive lung disease, and sickle cell disease. Many studies were not completed, likely due to decrease in air travel during the Covid-19 pandemic. Patients with abnormal results were younger and more likely to have baseline oxygen requirements. Further research is needed to better understand which pediatric patients are at risk for cardiorespiratory compromise during flight or at altitude.","PeriodicalId":262892,"journal":{"name":"C36. HOT TOPICS IN BEHAVIORAL SCIENCES AND HEALTH SERVICES RESEARCH","volume":"54 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"121427952","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Does Air Pollution Impact Medication and Laboratory Test Utilization Among Children?","authors":"T. To, E. Terebessy, J. Zhu, K. Zhang, S. Dell, D. Stieb","doi":"10.1164/ajrccm-conference.2022.205.1_meetingabstracts.a3990","DOIUrl":"https://doi.org/10.1164/ajrccm-conference.2022.205.1_meetingabstracts.a3990","url":null,"abstract":"","PeriodicalId":262892,"journal":{"name":"C36. HOT TOPICS IN BEHAVIORAL SCIENCES AND HEALTH SERVICES RESEARCH","volume":"1 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"130294312","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}