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Data sharing is increasingly an expectation in health research as part of a general move toward more open sciences. In the United States, in particular, the implementation of the 2023 National Institutes of Health Data Management and Sharing Policy has made it clear that qualitative studies are not exempt from this data sharing requirement. Recognizing this trend, the Palliative Care Research Cooperative Group (PCRC) realized the value of creating a de-identified qualitative data repository to complement its existing de-identified quantitative data repository. The PCRC Data Informatics and Statistics Core leadership partnered with the Qualitative Data Repository (QDR) to establish the first serious illness and palliative care qualitative data repository in the U.S. We describe the processes used to develop this repository, called the PCRC-QDR, as well as our outreach and education among the palliative care researcher community, which led to the first ten projects to share the data in the new repository. Specifically, we discuss how we co-designed the PCRC-QDR and created tailored guidelines for depositing and sharing qualitative data depending on the original research context, establishing uniform expectations for key components of relevant documentation, and the use of suitable access controls for sensitive data. We also describe how PCRC was able to leverage its existing community to recruit and guide early depositors and outline lessons learned in evaluating the experience. This work advances the establishment of best practices in qualitative data sharing.
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Disseminação de Informação , Cuidados Paliativos , Pesquisa Qualitativa , Humanos , Estados Unidos , Pesquisa Biomédica , Bases de Dados FactuaisRESUMO
BACKGROUND: Intensive care unit (ICU) telemedicine is an increasingly common strategy for improving the outcome of critical care, but its overall impact is uncertain. OBJECTIVES: To determine the effectiveness of ICU telemedicine in a national sample of hospitals and quantify variation in effectiveness across hospitals. RESEARCH DESIGN: We performed a multicenter retrospective case-control study using 2001-2010 Medicare claims data linked to a national survey identifying US hospitals adopting ICU telemedicine. We matched each adopting hospital (cases) to up to 3 nonadopting hospitals (controls) based on size, case-mix, and geographic proximity during the year of adoption. Using ICU admissions from 2 years before and after the adoption date, we compared outcomes between case and control hospitals using a difference-in-differences approach. RESULTS: A total of 132 adopting case hospitals were matched to 389 similar nonadopting control hospitals. The preadoption and postadoption unadjusted 90-day mortality was similar in both case hospitals (24.0% vs. 24.3%, P=0.07) and control hospitals (23.5% vs. 23.7%, P<0.01). In the difference-in-differences analysis, ICU telemedicine adoption was associated with a small relative reduction in 90-day mortality (ratio of odds ratios=0.96; 95% CI, 0.95-0.98; P<0.001). However, there was wide variation in the ICU telemedicine effect across individual hospitals (median ratio of odds ratios=1.01; interquartile range, 0.85-1.12; range, 0.45-2.54). Only 16 case hospitals (12.2%) experienced statistically significant mortality reductions postadoption. Hospitals with a significant mortality reduction were more likely to have large annual admission volumes (P<0.001) and be located in urban areas (P=0.04) compared with other hospitals. CONCLUSIONS: Although ICU telemedicine adoption resulted in a small relative overall mortality reduction, there was heterogeneity in effect across adopting hospitals, with large-volume urban hospitals experiencing the greatest mortality reductions.
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Mortalidade Hospitalar/tendências , Unidades de Terapia Intensiva/estatística & dados numéricos , Telemedicina/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Estudos de Casos e Controles , Comorbidade , Grupos Diagnósticos Relacionados , Feminino , Hospitais com Alto Volume de Atendimentos/estatística & dados numéricos , Humanos , Tempo de Internação/estatística & dados numéricos , Masculino , Medicare/estatística & dados numéricos , Alta do Paciente/estatística & dados numéricos , Características de Residência , Estudos Retrospectivos , Estados UnidosRESUMO
OBJECTIVE: To understand hospital-level variation in triage practices for patients with moderate-to-severe injuries presenting initially to nontrauma centers. BACKGROUND: Many patients with moderate-to-severe traumatic injuries receive care at nontrauma hospitals, despite evidence of a survival benefit from treatment at trauma centers. METHODS: We used claims from the Centers for Medicare and Medicaid Services to identify patients with moderate-to-severe injuries who presented initially to nontrauma centers. We determined whether or not they were transferred to a level I or II trauma center within 24 hours of presentation, and used multivariate regression to assess the influence of hospital-level factors on triage practices, after adjusting for differences in case mix. RESULTS: Transfer of patients with moderate-to-severe injuries to trauma centers occurred infrequently, with significant variation among hospitals (median 2%; interquartile range 1%-6%). Greater resource availability at nontrauma centers was associated with lower rates of successful triage, including the presence of neurosurgeons (relative reduction in transfer rate: 76%, P < 0.01), more than 20 intensive care unit beds (relative reduction 30%, P < 0.01) and a high resident-to-bed ratio (relative reduction 23%, P < 0.01). However, patients were more likely to survive if they presented to hospitals with higher triage rates (odds of death for patients cared for at hospitals with the highest tercile of triage rates, compared with lowest tercile: 0.92; 95% confidence interval: 0.85-0.99, P = 0.02). CONCLUSIONS: Injured Medicare beneficiaries presenting to nontrauma centers experience high rates of undertriage, determined in part by increasing availability of resources. Care at hospitals with low rates of successful triage is associated with worse outcomes.
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Serviço Hospitalar de Emergência/estatística & dados numéricos , Medicare , Transferência de Pacientes/estatística & dados numéricos , Triagem/estatística & dados numéricos , Ferimentos e Lesões/terapia , Idoso , Idoso de 80 Anos ou mais , Estudos de Coortes , Serviço Hospitalar de Emergência/organização & administração , Feminino , Humanos , Escala de Gravidade do Ferimento , Modelos Logísticos , Masculino , Análise Multivariada , Estudos Retrospectivos , Centros de Traumatologia/organização & administração , Centros de Traumatologia/estatística & dados numéricos , Resultado do Tratamento , Estados Unidos , Ferimentos e Lesões/mortalidadeRESUMO
INTRODUCTION: Local coverage determinations (LCDs) are local decisions that regulate healthcare coverage. We evaluated the impact of LCDs as well as patient, tumor, and market characteristics on the adoption of stereotactic body radiation therapy (SBRT) for prostate cancer. METHODS: Using Surveillance, Epidemiology, and End Results (SEER)-Medicare, we identified men treated with SBRT, intensity-modulated radiotherapy (IMRT), and robotic prostatectomy. We compared demographics, clinical characteristics, and market factors among these three treatments. Our primary exposure was LCD policy; using the Medicare Coverage Database, we categorized LCDs as favorable (SBRT covered), neutral (SBRT covered in the context of a clinical trial or registry), unfavorable (SBRT not covered), or absent (i.e., SBRT not governed by an LCD at the time of treatment). We fit a multivariable multinomial logistic regression model and generated predicted probabilities to examine the relation between LCDs and SBRT. RESULTS: During this early period of SBRT adoption, IMRT was the most common of the three treatments followed by robotic prostatectomy and then SBRT. SBRT use was high when governed by favorable and neutral LCDs and lowest when governed by unfavorable LCDs. Compared with favorable LCDs, areas where LCDs were absent were associated with higher SBRT use compared with IMRT (odds ratio [OR] 1.56; 95%CI, 1.07-2.25) and robotic prostatectomy (OR 1.84; 95%CI, 1.25-2.69). CONCLUSIONS: When present, LCDs appear to regulate early SBRT adoption, but, when absent, are associated with increased SBRT use. Although SBRT use was uncommon, it varied across a wide range of patient, tumor, and market characteristics.
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OBJECTIVES: The objectives were to evaluate general emergency department (ED) variation in head computed tomography (CT) use for pediatric head trauma, hospital factors associated with CT use, and recent secular trends in CT utilization for pediatric head trauma. METHODS: This was a cross-sectional study of a sample of general EDs in the Nationwide Emergency Department Sample (NEDS; 2006-2010). The authors included visits by patients <19 years of age with International Classification of Diseases, 9th Revision, Clinical Modification, diagnosis codes for head trauma and determined head CT use via Current Procedural Terminology (CPT), Fourth Edition, codes. Crude and risk-adjusted proportions of visits with CT for each hospital were calculated using multilevel mixed effects logistic regression. The association between hospital-level characteristics and head CT were evaluated by constructing multivariable negative binomial regression models. RESULTS: There were 324,435 pediatric head trauma visits to 848 EDs in the sample. Median patient age was 8 years (interquartile range [IQR] = 2 to 15 years) and 62% of visits were by males. A minority of patients (0.7%) were severely injured, and only 4.2% were admitted to the hospital. Most EDs (79%) were nonteaching institutions, and 84% were nontrauma centers. Risk-adjusted median CT use was 56.0% (IQR = 46.4% to 64.7%). In multivariate analysis, nontrauma centers were 9% (95% confidence interval [CI] = 4% to 15%) less likely to use head CT for pediatric head trauma patients and among discharged patients, EDs within nonteaching hospitals were 8% more likely to perform CT imaging (95% CI = 2% to 14%). There was no change in CT use from 2006 through 2010 (p = 0.31). CONCLUSIONS: There is significant variability among general EDs in CT use for pediatric head trauma, indicating the need for strategies to reduce variation and improve ED imaging practices for this population.
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Traumatismos Craniocerebrais/diagnóstico por imagem , Serviço Hospitalar de Emergência/organização & administração , Tomografia Computadorizada por Raios X/estatística & dados numéricos , Adolescente , Distribuição por Idade , Criança , Pré-Escolar , Traumatismos Craniocerebrais/epidemiologia , Estudos Transversais , Feminino , Hospitalização/estatística & dados numéricos , Humanos , Lactente , Masculino , Alta do Paciente/estatística & dados numéricos , Estudos Retrospectivos , Distribuição por SexoRESUMO
BACKGROUND: ICUs are increasingly staffed with nurse practitioners/physician assistants (NPs/PAs), but it is unclear how NPs/PAs influence quality of care. We examined the association between NP/PA staffing and in-hospital mortality for patients in the ICU. METHODS: We used retrospective cohort data from the 2009 to 2010 APACHE (Acute Physiology and Chronic Health Evaluation) clinical information system and an ICU-level survey. We included patients aged ≥ 17 years admitted to one of 29 adult medical and mixed medical/surgical ICUs in 22 US hospitals. Because this survey could not assign NPs/PAs to individual patients, the primary exposure was admission to an ICU where NPs/PAs participated in patient care. The primary outcome was patient-level in-hospital mortality. We used multivariable relative risk regression to examine the effect of NPs/PAs on in-hospital mortality, accounting for differences in case mix, ICU characteristics, and clustering of patients within ICUs. We also examined this relationship in the following subgroups: patients on mechanical ventilation, patients with the highest quartile of Acute Physiology Score (> 55), and ICUs with low-intensity physician staffing and with physician trainees. RESULTS: Twenty-one ICUs (72.4%) reported NP/PA participation in direct patient care. Patients in ICUs with NPs/PAs had lower mean Acute Physiology Scores (42.4 vs 46.7, P < .001) and mechanical ventilation rates (38.8% vs 44.2%, P < .001) than ICUs without NPs/PAs. Unadjusted and risk-adjusted mortality was similar between groups (adjusted relative risk, 1.10; 95% CI, 0.92-1.31). This result was consistent in all examined subgroups. CONCLUSIONS: NPs/PAs appear to be a safe adjunct to the ICU team. The findings support NP/PA management of critically ill patients.