Resilience in Healthcare (RiH): a longitudinal research programme protocol

INTRODUCTION: Over the past three decades, extensive research has been undertaken to understand the elements of what constitutes high quality in healthcare. Yet, much of this research has been conducted on individual elements and their specific challenges. Hence, goals other than understanding the complex of factors and elements that comprises quality in healthcare have been privileged. This lack of progress has led to the conclusion that existing approaches to research are not able to address the inherent complexity of healthcare systems as characterised by a significant degree of performance variability within and across system levels, and what makes them resilient. A shift is, therefore, necessary in such approaches. Resilience in Healthcare (RiH) adopts an approach comprising a comprehensive research programme that models the capacity of healthcare systems and stakeholders to adapt to changes, variations and/or disruptions: that is, resilience. As such, RiH offers a fresh approach capable of capturing and illuminating the complexity of healthcare and how high-quality care can be understood and advanced. METHODS AND ANALYSIS: Methodologically, to illuminate what constitutes quality in healthcare, it is necessary to go beyond single-site, case-based studies. Instead, there is a need to engage in multi-site, cross-national studies and engage in long-term multidisciplinary collaboration between national and international researchers interacting with multiple healthcare stakeholders. By adopting such processes, multiple partners and a multidisciplinary orientation, the 5-year RiH research programme aims to confront these challenges and accelerate current understandings about and approaches to researching healthcare quality.The RiH research programme adopts a longitudinal collaborative interactive design to capture and illuminate resilience as part of healthcare quality in different healthcare settings in Norway and in five other countries. It combines a meta-analysis of detailed empirical research in Norway with cross-country comparison from Australia, Japan, Netherlands, Switzerland and the UK. Through establishing an RiH framework, the programme will identify processes with outcomes that aim to capture how high-quality healthcare provisions are achieved. A collaborative learning framework centred on engagement aims to systematically translate research findings into practice through co-construction processes with partners and stakeholders. ETHICS AND DISSEMINATION: The RiH research programme is approved by the Norwegian Centre for Research Data (No. 864334). The empirical projects selected for inclusion in this longitudinal research programme have been approved by the Norwegian Centre for Research Data or the Regional Committees for Medical and Health Research Ethics. The RiH research programme has an embedded publication and dissemination strategy focusing on the progressive sharing of scientific knowledge, information and results, and on engaging with the public, including relevant patient and stakeholder representatives. The findings will be disseminated through scientific articles, PhD dissertations, presentations at national and international conferences, and through social media, newsletters and the popular media

Excellent agreement of Norwegian trauma registry data compared to corresponding data in electronic patient records

Abstract Background The Norwegian Trauma Registry (NTR) is designed to monitor and improve the quality and outcome of trauma care delivered by Norwegian trauma hospitals. Patient care is evaluated through specific quality indicators, which are constructed of variables reported to the registry by certified registrars. Having high-quality data recorded in the registry is essential for the validity, trust and use of data. This study aims to perform a data quality check of a subset of core data elements in the registry by assessing agreement between data in the NTR and corresponding data in electronic patient records (EPRs). Methods We validated 49 of the 118 variables registered in the NTR by comparing those with the corresponding ones in electronic patient records for 180 patients with a trauma diagnosis admitted in 2019 at eight public hospitals. Agreement was quantified by calculating observed agreement, Cohen’s Kappa and Gwet’s first agreement coefficient (AC1) with 95% confidence intervals (CIs) for 27 nominal variables, quadratic weighted Cohen’s Kappa and Gwet’s second agreement coefficient (AC2) for five ordinal variables. For nine continuous, one date and seven time variables, we calculated intraclass correlation coefficient (ICC). Results Almost perfect agreement (AC1 /AC2/ ICC > 0.80) was observed for all examined variables. Nominal and ordinal variables showed Gwet’s agreement coefficients ranging from 0.85 (95% CI: 0.79–0.91) to 1.00 (95% CI: 1.00–1.00). For continuous and time variables there were detected high values of intraclass correlation coefficients (ICC) between 0.88 (95% CI: 0.83–0.91) and 1.00 (CI 95%: 1.00–1.00). While missing values in both the NTR and EPRs were in general negligeable, we found a substantial amount of missing registrations for a continuous “Base excess” in the NTR. For some of the time variables missing values both in the NTR and EPRs were high. Conclusion All tested variables in the Norwegian Trauma Registry displayed excellent agreement with the corresponding variables in electronic patient records. Variables in the registry that showed missing data need further examination

Injury Prevention and long-term Outcomes following Trauma—the IPOT project: a protocol for prospective nationwide registry-based studies in Norway

Introduction Traumatic injuries constitute a major cause of mortality and morbidity. Still, the public health burden of trauma in Norway has not been characterised using nationwide registry data. More knowledge is warranted on trauma risk factors and the long-term outcomes following trauma. The Injury Prevention and long-term Outcomes following Trauma project will establish a comprehensive research database. The Norwegian National Trauma Registry (NTR) will be merged with several data sources to pursue the following three main research topics: (1) the public health burden of trauma to society (eg, excess mortality and disability-adjusted life-years (DALYs)), (2) trauma aetiology (eg, socioeconomic factors, comorbidity and drug use) and (3) trauma survivorship (eg, survival, drug use, use of welfare benefits, work ability, education and income).Methods and analysis The NTR (n≈27 000 trauma patients, 2015–2018) will be coupled with the data from Statistics Norway, the Norwegian Patient Registry, the Cause of Death Registry, the Registry of Primary Health Care and the Norwegian Prescription Database. To quantify the public health burden, DALYs will be calculated from the NTR. To address trauma aetiology, we will conduct nested case–control studies with 10 trauma-free controls (drawn from the National Population Register) matched to each trauma case on birth year, sex and index date. Conditional logistic regression models will be used to estimate trauma risk according to relevant exposures. To address trauma survivorship, we will use cohort and matched cohort designs and time-to-event analyses to examine various post-trauma outcomes.Ethics and dissemination The project is approved by the Regional Committee for Medical Research Ethics. The project’s data protection impact assessment is approved by the data protection officer. Results will be disseminated to patients, in peer-reviewed journals, at conferences and in the media

Progressive Motor and Non-Motor Symptoms in <em>Park7</em> Knockout Zebrafish

DJ-1 is a redox sensitive protein with a wide range of functions related to oxidative stress protection. Mutations in the park7 gene, which codes for DJ-1 are associated with early onset familial Parkinson’s disease and increased astrocytic DJ-1 levels are found in pathologic tissues from idiopathic Parkinson’s disease. We have previously established a DJ-1 knockout zebrafish line that developed normally, but with aging the DJ-1 null fish had a lowered level of tyrosine hydroxylase, respiratory mitochondrial failure and a lower body mass. Here we have examined the DJ-1 knockout from the early adult stage and show that loss of DJ-1 results in a progressive, age-dependent increase in both motoric and non-motoric symptoms associated to Parkinson’s disease. These changes coincide with changes in mitochondrial and mitochondrial associated proteins. Recent studies have suggested that a decline in NAD+ can contribute to Parkinson’s disease and that supplementation of NAD+ precursors may delay disease progression. We found that the brain NAD+/NADH ratio decreased in aging zebrafish but did not correlate with DJ-1 induced altered behavior. Differences were first observed at the late adult stage in which NAD+ and NADPH levels were decreased in DJ-1 knockouts. Considering the experimental power of zebrafish and the development of Parkinson’s disease-related symptoms in the DJ-1 null fish, this model can serve as a useful tool both to understand the progression of the disease and the effect of suggested treatments

Traumatic brain injury : integrated approaches to improve prevention, clinical care, and research

Rahul Raj on työryhmän InTBIR Participants Investigators jäsen.Peer reviewe

Occurrence and timing of withdrawal of life-sustaining measures in traumatic brain injury patients: a CENTER-TBI study

Background In patients with severe brain injury, withdrawal of life-sustaining measures (WLSM) is common in intensive care units (ICU). WLSM constitutes a dilemma: instituting WLSM too early could result in death despite the possibility of an acceptable functional outcome, whereas delaying WLSM could unnecessarily burden patients, families, clinicians, and hospital resources. We aimed to describe the occurrence and timing of WLSM, and factors associated with timing of WLSM in European ICUs in patients with traumatic brain injury (TBI). Methods The CENTER-TBI Study is a prospective multi-center cohort study. For the current study, patients with traumatic brain injury (TBI) admitted to the ICU and aged 16 or older were included. Occurrence and timing of WLSM were documented. For the analyses, we dichotomized timing of WLSM in early (< 72 h after injury) versus later (≥ 72 h after injury) based on recent guideline recommendations. We assessed factors associated with initiating WLSM early versus later, including geographic region, center, patient, injury, and treatment characteristics with univariable and multivariable (mixed effects) logistic regression. Results A total of 2022 patients aged 16 or older were admitted to the ICU. ICU mortality was 13% (n = 267). Of these, 229 (86%) patients died after WLSM, and were included in the analyses. The occurrence of WLSM varied between regions ranging from 0% in Eastern Europe to 96% in Northern Europe. In 51% of the patients, WLSM was early. Patients in the early WLSM group had a lower maximum therapy intensity level (TIL) score than patients in the later WLSM group (median of 5 versus 10) The strongest independent variables associated with early WLSM were one unreactive pupil (odds ratio (OR) 4.0, 95% confidence interval (CI) 1.3–12.4) or two unreactive pupils (OR 5.8, CI 2.6–13.1) compared to two reactive pupils, and an Injury Severity Score (ISS) if over 41 (OR per point above 41 = 1.1, CI 1.0–1.1). Timing of WLSM was not significantly associated with region or center. Conclusion WLSM occurs early in half of the patients, mostly in patients with severe TBI affecting brainstem reflexes who were severely injured. We found no regional or center influences in timing of WLSM. Whether WLSM is always appropriate or may contribute to a self-fulfilling prophecy requires further research and argues for reluctance to institute WLSM early in case of any doubt on prognosis

Occurrence and timing of withdrawal of life-sustaining measures in traumatic brain injury patients: a CENTER-TBI study

Background In patients with severe brain injury, withdrawal of life-sustaining measures (WLSM) is common in intensive care units (ICU). WLSM constitutes a dilemma: instituting WLSM too early could result in death despite the possibility of an acceptable functional outcome, whereas delaying WLSM could unnecessarily burden patients, families, clinicians, and hospital resources. We aimed to describe the occurrence and timing of WLSM, and factors associated with timing of WLSM in European ICUs in patients with traumatic brain injury (TBI). Methods The CENTER-TBI Study is a prospective multi-center cohort study. For the current study, patients with traumatic brain injury (TBI) admitted to the ICU and aged 16 or older were included. Occurrence and timing of WLSM were documented. For the analyses, we dichotomized timing of WLSM in early (< 72 h after injury) versus later (≥ 72 h after injury) based on recent guideline recommendations. We assessed factors associated with initiating WLSM early versus later, including geographic region, center, patient, injury, and treatment characteristics with univariable and multivariable (mixed effects) logistic regression. Results A total of 2022 patients aged 16 or older were admitted to the ICU. ICU mortality was 13% (n = 267). Of these, 229 (86%) patients died after WLSM, and were included in the analyses. The occurrence of WLSM varied between regions ranging from 0% in Eastern Europe to 96% in Northern Europe. In 51% of the patients, WLSM was early. Patients in the early WLSM group had a lower maximum therapy intensity level (TIL) score than patients in the later WLSM group (median of 5 versus 10) The strongest independent variables associated with early WLSM were one unreactive pupil (odds ratio (OR) 4.0, 95% confidence interval (CI) 1.3–12.4) or two unreactive pupils (OR 5.8, CI 2.6–13.1) compared to two reactive pupils, and an Injury Severity Score (ISS) if over 41 (OR per point above 41 = 1.1, CI 1.0–1.1). Timing of WLSM was not significantly associated with region or center. Conclusion WLSM occurs early in half of the patients, mostly in patients with severe TBI affecting brainstem reflexes who were severely injured. We found no regional or center influences in timing of WLSM. Whether WLSM is always appropriate or may contribute to a self-fulfilling prophecy requires further research and argues for reluctance to institute WLSM early in case of any doubt on prognosis