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OBJECTIVES: To quantify the frequency and patterns of clinicians' use of choice frames when discussing preference-sensitive care with surrogate decision-makers in the ICU. DESIGN: Secondary sequential content analysis. SETTING: One hundred one audio-recorded and transcribed conferences between surrogates and clinicians of incapacitated, critically ill adults from a prospective, multicenter cohort study. SUBJECTS: Surrogate decision-makers and clinicians. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Four coders identified preference-sensitive decision episodes addressed in the meetings, including topics such as mechanical ventilation, renal replacement, and overall goals of care. Prior critical care literature provided specific topics identified as preference-sensitive specific to the critical care context. Coders then examined each decision episode for the types of choice frames used by clinicians. The choice frames were selected a priori based on decision science literature. In total, there were 202 decision episodes across the 101 transcripts, with 20.3% of the decision episodes discussing mechanical ventilation, 19.3% overall goals of care, 14.4% renal replacement therapy, 14.4% post-discharge care (i.e., discharge location such as a skilled nursing facility), and the remaining 32.1% other topics. Clinicians used default framing, in which an option is presented that will be carried out if another option is not actively chosen, more frequently than any other choice frame (127 or 62.9% of decision episodes). Clinicians presented a polar interrogative, or a "yes or no question" to accept or reject a specific care choice, in 43 (21.3%) decision episodes. Clinicians more frequently presented options emphasizing both potential losses and gains rather than either in isolation. CONCLUSIONS: Clinicians frequently use default framing and polar questions when discussing preference-sensitive choices with surrogate decision-makers, which are known to be powerful nudges. Future work should focus on designing interventions promoting the informed use of these and the other most common choice frames used by practicing clinicians.
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OBJECTIVE: Acute calcium pyrophosphate (CPP) crystal arthritis is a distinct manifestation of calcium pyrophosphate crystal deposition (CPPD). No studies have specifically examined whether acute CPP crystal arthritis is associated with progressive structural joint damage. The objective of this retrospective cohort study was to evaluate the relative rate of hip and knee joint arthroplasties as an estimate of structural joint damage accrual, in a population of patients with acute CPP crystal arthritis. METHODS: Data were collected from Waikato District Health Board (WDHB) to identify an acute CPP crystal arthritis cohort with clinical episodes highly characteristic of acute CPP crystal arthritis. Data on hip and knee joint arthroplasties were collected from the New Zealand Orthopaedic Association's Joint Registry. The rate of arthroplasties in the cohort was compared with the age-ethnicity-matched New Zealand population. Additional analysis was performed for age, obesity (BMI) and ethnicity. RESULTS: The acute CPP crystal arthritis cohort included 99 patients; 63 were male and the median age was 77 years (interquartile range, 71-82). The obesity rate was 36% with a median BMI of 28.4 kg/m2 (interquartile range, 25.8-32.2), comparable to the New Zealand population. The standardized surgical rate ratio in the cohort vs the age-ethnicity-matched New Zealand population was 2.54 (95% CI: 1.39, 4.27). CONCLUSION: Our study identified a considerable increase in the rate of hip and knee joint arthroplasties in patients with episodes of acute CPP crystal arthritis. This suggests CPP crystal arthritis may be a chronic condition, leading to progressive joint damage.
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Condrocalcinose , Humanos , Masculino , Idoso , Feminino , Pirofosfato de Cálcio , Estudos Retrospectivos , Articulação do Joelho/cirurgia , ObesidadeRESUMO
OBJECTIVES: This study aims to explore the treatment pattern of systemic lupus erythematosus (SLE) in Aotearoa/New Zealand. METHODS: SLE patients were linked to the pharmaceutical dispensing data. The use of publicly funded anti-malarials, immunomodulators, biologics, glucocorticoids and bisphosphonates were compared by gender, ethnicity, age group, socioeconomic status and year of SLE identification. Adherence to hydroxychloroquine was examined using the medication possession ratio (MPR), with a MPR of ≥0.8 considered as high adherence. RESULTS: Of the 2631 SLE patients, 73.8% used hydroxychloroquine, 64.1% used immunomodulators/biologics and 68.0% used 5 mg or more prednisone daily for at least 90 days. Women were more likely to use hydroxychloroquine than men. Asian patients had a different treatment pattern than other ethnic groups, and Maori were less likely to use hydroxychloroquine. The proportions of patients using different treatments decreased with age. Of the patients using hydroxychloroquine, 54.5% had high adherence. For patients over 40 years old and on long term prednisone, 47.3% had bisphosphonates and this figure was 17.8% for patients under the age of 40 years old. Patients with better socioeconomic status had a higher probability of using bisphosphonates than patients with lower socioeconomic status. CONCLUSIONS: Adherence to hydroxychloroquine in these patients varied and was lower in men and in Maori. Prednisone is commonly prescribed and used long term. Half of those over the age of 40 years old co-administered bisphosphonate. Further research is needed to identify the reasons for these discrepancies on SLE treatments by gender, ethnicity, age and socioeconomic status.
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INTRODUCTION: Deliberate practice, goal-oriented training with feedback from a coach, is a common tool for improving physicians' performance. However, little is known about how coaches foster performance improvement. METHODS: A content analysis of video-recorded training sessions was performed to analyze the coaches' behaviors during a pilot randomized trial of deliberate practice in trauma triage. The intervention consisted of three video-conference sessions during which trial physicians, under the supervision of a coach, played a customized video game designed to review trauma triage principles. A multidisciplinary team specified tasks (e.g., create collaborative learning environment) that coaches should complete, and suggested 19 coaching strategies (e.g., encourage culture of error) to allow execution of these tasks. Two independent raters translated those strategies into a coding framework and applied it deductively to the recorded sessions. The frequencies of the coaching strategies were summarized, and tested for variation across coaches and time. RESULTS: Thirty physicians received the intervention across two 1-mo blocks. Most (28 [93%]) completed three sessions, each covering two (interquartile range 1-2) triage principles. Coaches used coaching strategies 18 (interquartile range 14.5-22) times per triage principle, using some often (2-3 times/principle) and others infrequently (<1 time/principle). The three coaches used similar numbers (20 versus 16 versus 18.5, P = 0.07) and types of strategies. However, use increased over time (16.8 [Block 1] versus 20 [Block 2] P = 0.018). CONCLUSIONS: Coaches used 19 coaching strategies to deliver this deliberate practice intervention, with behavior that evolved over time. Future trials should isolate the most potent strategies and should assess the best method of standardizing coaching.
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STUDY OBJECTIVE: Identification of HIV remains a critical health priority for which emergency departments (EDs) are a central focus. The comparative cost-effectiveness of various HIV screening strategies in EDs remains largely unknown. The goal of this study was to compare programmatic costs and cost-effectiveness of nontargeted and 2 forms of targeted opt-out HIV screening in EDs using results from a multicenter, pragmatic randomized clinical trial. METHODS: This economic evaluation was nested in the HIV Testing Using Enhanced Screening Techniques in Emergency Departments (TESTED) trial, a multicenter pragmatic clinical trial of different ED-based HIV screening strategies conducted from April 2014 through January 2016. Patients aged 16 years or older, with normal mental status and not critically ill, or not known to be living with HIV were randomized to 1 of 3 HIV opt-out screening approaches, including nontargeted, enhanced targeted, or traditional targeted, across 4 urban EDs in the United States. Each screening method was fully integrated into routine emergency care. Direct programmatic costs were determined using actual trial results, and time-motion assessment was used to estimate personnel activity costs. The primary outcome was newly diagnosed HIV. Total annualized ED programmatic costs by screening approach were calculated using dollars adjusted to 2023 as were costs per patient newly diagnosed with HIV. One-way and multiway sensitivity analyses were performed. RESULTS: The trial randomized 76,561 patient visits, resulting in 14,405 completed HIV tests, and 24 (0.2%) new diagnoses. Total annualized new diagnoses were 12.9, and total annualized costs for nontargeted, enhanced targeted, and traditional targeted screening were $111,861, $88,629, and $70,599, respectively. Within screening methods, costs per new HIV diagnoses were $20,809, $23,554, and $18,762, respectively. Enhanced targeted screening incurred higher costs but with similar annualized new cases detected compared with traditional targeted screening. Nontargeted screening yielded an incremental cost-effectiveness ratio of $25,586 when compared with traditional targeted screening. Results were most sensitive to HIV prevalence and costs of HIV tests. CONCLUSION: Nontargeted HIV screening was more costly than targeted screening largely due to an increased number of HIV tests performed. Each HIV screening strategy had similar within-strategy costs per new HIV diagnosis with traditional targeted screening yielding the lowest cost per new diagnosis. For settings with budget constraints or very low HIV prevalences, the traditional targeted approach may be preferred; however, given only a slightly higher cost per new HIV diagnosis, ED settings looking to detect the most new cases may prefer nontargeted screening.
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Análise Custo-Benefício , Serviço Hospitalar de Emergência , Infecções por HIV , Programas de Rastreamento , Humanos , Serviço Hospitalar de Emergência/economia , Infecções por HIV/diagnóstico , Infecções por HIV/economia , Programas de Rastreamento/economia , Programas de Rastreamento/métodos , Feminino , Adulto , Masculino , Estados Unidos , Pessoa de Meia-Idade , Teste de HIV/economia , Teste de HIV/métodos , Adulto JovemRESUMO
BACKGROUND: The fear of taking away hope hinders clinicians' willingness to share serious news with patients with advanced disease. Unrealistic illness expectations, on the other hand, can complicate decision making and end-of-life care outcomes. Exploration of the association between hope and illness expectations can support clinicians in better communication with their patients. AIM: The aim of this study was to explore whether realistic illness expectations are associated with reduced hope in people with advanced cancer. DESIGN: This is a cross-sectional secondary analysis of baseline data from a primary palliative care cluster-randomized trial CONNECT (data collected from July 2016 to October 2020). Hope was measured by Herth Hope Index. Illness expectations were measured by assessing patients' understanding of their treatment goals, life expectancy, and terminal illness acknowledgement. Multivariable regression was performed, adjusting for demographical and clinical confounders. SETTING/PARTICIPANTS: Adult patients with advanced solid cancers recruited across 17 oncology clinics. RESULTS: Data from 672 patients were included in the study, with mean age of 69.3 years (±10.2), 53.6% were female. Proportion of patients indicating realistic expectations varied based on which question was asked from 10% to 46%. Median level of hope was 39 (IQR = 36-43). Multivariate non-inferiority regression did not find any significant differences in hope between patients with more and less realistic illness expectations. CONCLUSIONS: Our results suggest that hope can be sustained while holding both realistic and unrealistic illness expectations. Communication about serious news should focus on clarifying the expectations as well as supporting people's hopes.
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Neoplasias , Assistência Terminal , Adulto , Idoso , Feminino , Humanos , Masculino , Estudos Transversais , Esperança , Motivação , Neoplasias/terapia , Cuidados Paliativos/métodos , Pessoa de Meia-Idade , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
OBJECTIVES: To identify self-reported meaningful decisions made by parents in the PICU and to determine patient and parent characteristics associated with the development of parental decision regret, a measurable, self-reported outcome associated with psychologic morbidity. DESIGN: Secondary analysis of the Navigate randomized comparative trial (NCT02333396). SETTING: Two tertiary, academic PICUs. PATIENTS: Spanish- or English-speaking parents of PICU patients aged less than 18 years who were expected to remain in the PICU for greater than 24 hours from time of enrollment or who had a risk of mortality greater than 4% based on Pediatric Index of Mortality 2 score. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Between April 2015 and March 2017, 233 parents of 209 patients completed a survey 3-5 weeks post-PICU discharge which included the Decision Regret Scale (DRS), a 5-item, 5-point Likert scale tool scored from 0 (no regret) to 100 (maximum regret). Two hundred nine patient/parent dyads were analyzed. The decisions parents reported as most important were categorized as: procedure, respiratory support, medical management, parent-staff interactions and communication, symptom management, fluid/electrolytes/nutrition, and no decision. Fifty-one percent of parents had some decision regret (DRS > 0) with 19% scoring in the moderate-severe range (DRS 26-100). The mean DRS score was 12.7 ( sd 18.1). Multivariable analysis showed that parental Hispanic ethnicity was associated with greater odds ratio (OR 3.12 [95% CI, 1.36-7.13]; p = 0.007) of mild regret. Being parents of a patient with an increased PICU length of stay (LOS) or underlying respiratory disease was associated with greater odds of moderate-severe regret (OR 1.03 [95% CI, 1.009-1.049]; p = 0.004 and OR 2.91 [95% CI, 1.22-6.94]; p = 0.02, respectively). CONCLUSIONS: Decision regret was experienced by half of PICU parents in the 2015-2017 Navigate study. The characteristics associated with decision regret (parental ethnicity, PICU LOS, and respiratory disease) are easily identifiable. Further study is needed to understand what contributes to regret in this population and what interventions could provide support and minimize the development of regret.
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Tomada de Decisões , Emoções , Unidades de Terapia Intensiva Pediátrica , Pais , Humanos , Pais/psicologia , Masculino , Feminino , Criança , Pré-Escolar , Lactente , Adolescente , Autorrelato , AdultoRESUMO
OBJECTIVES: To describe challenges experienced by parents of children hospitalized in the PICU during PICU admission as reported by family navigators. DESIGN: A preplanned secondary analysis of open-response data coded via inductive qualitative approach from the Navigate randomized controlled trial (RCT) dataset (ID NCT02333396). SETTING: Two university-affiliated PICUs in the Midwestern United States as part of an RCT. PATIENTS: Two hundred twenty-four parents of 190 PICU patients. INTERVENTIONS: In 2015-2017, trained family navigators assessed and addressed parent needs, offered weekly family meetings, and provided post-PICU discharge parent check-ins as part of a study investigating the effectiveness of a communication support intervention ("PICU Supports"). MEASUREMENTS AND MAIN RESULTS: We analyzed qualitative data recorded by family navigators weekly across 338 encounters. Navigators described families' "biggest challenge," "communication challenges," and ways the team could better support the family. We used an inductive qualitative coding approach and a modified member-checking exercise. The most common difficulties included home life , hospitalization , and diagnosis distress (45.2%, 29.0%, and 17.2% of families, respectively). Navigators often identified that parents had co-occurring challenges. Communication was identified as a "biggest challenge" for 8% of families. Communication challenges included lack of information, team communication , and communication quality (7.0%, 4.8%, and 4.8% of families, respectively). Suggestions for improving care included better medical communication, listening, rapport, and resources. CONCLUSIONS: This study describes families' experiences and challenges assessed throughout the PICU stay. Family navigators reported families frequently experience stressors both internal and external to the hospital environment, and communication challenges between families and providers may be additional sources of distress. Further research should develop and assess interventions aimed at improving provider-family communication and reducing stressors outside the hospitalization itself, such as home life difficulties.
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Hospitalização , Pais , Criança , Humanos , Comunicação , Hospitais , Unidades de Terapia Intensiva PediátricaRESUMO
This study aims to examine the prevalence and outcomes of end-stage kidney disease (ESKD) among systemic lupus erythematosus (SLE) patients. SLE patients identified from the national administrative datasets were linked to the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) to identify the ESKD cases. Period prevalence of ESKD among SLE patients was calculated. The risk of developing ESKD by ethnicity was explored with Cox Proportional Hazards model. The adjusted hazard ratio (HR) of all-cause mortality for Maori, Pacific, Asian compared to European/others was estimated. Of the 2837 SLE patients, 210 (7.4%) developed ESKD. The average period prevalence of ESKD among SLE patients was 5.7%. Men had twice the prevalence rate of ESKD than women (10.0% vs 5.2%). Maori and Pacific had higher prevalence rate than Asian and European/others (9.4%, 9.8% vs 4.4% and 3.8%). The adjusted HR of developing ESKD for men compared to women was 3.37 (95% CI 1.62-7.02). The adjusted HR of developing ESKD for Maori and Pacific compared to European/others was 4.63 (95% CI 1.61-13.29) and 4.66 (95% CI 1.67-13.00), respectively. Compared to European/others, Maori had an HR of 2.17 (95% CI 1.18-4.00) for all-cause mortality. SLE patients had a high prevalence rate of ESKD. Men, Maori, and Pacific patients with SLE were more likely to develop ESKD. Maori patients with ESKD had poorer survival than other patients. Interventions are needed to reduce the risk of ESKD and to improve the survival of ESKD patients for the disadvantaged groups.
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Falência Renal Crônica , Lúpus Eritematoso Sistêmico , Feminino , Humanos , Masculino , Falência Renal Crônica/epidemiologia , Falência Renal Crônica/terapia , Falência Renal Crônica/etiologia , Lúpus Eritematoso Sistêmico/complicações , Lúpus Eritematoso Sistêmico/epidemiologia , Povo Maori , Prevalência , Diálise Renal/efeitos adversos , População das Ilhas do PacíficoRESUMO
In the pursuit of ending the HIV epidemic, U.S. emergency departments (EDs) have emerged as a valuable setting to increase HIV testing and linkage to care. There is limited data available, however, describing the incorporation of HIV prevention initiatives in U.S. EDs. Over the last decade, HIV pre-exposure prophylaxis (PrEP) has significantly changed the HIV prevention landscape globally and very little is known about the provision of PrEP in U.S. EDs. To address this gap in the literature, we conducted a systematic review of peer-reviewed quantitative studies and conference abstracts spanning July 2012 - October 2022. Of 433 citations, 11 articles and 13 abstracts meet our inclusion criteria, representing 18 unique studies addressing PrEP screening, prescribing, and/or linkage to PrEP care.Most studies describe screening processes to identify PrEP-eligible patients (n = 17); most studies leveraged a patient's STI history as initial PrEP eligibility screening criteria. Fewer studies describe PrEP prescribing (n = 2) and/or linkage to PrEP care (n = 8).Findings from this systematic review highlight the potential for U.S. EDs to increase PrEP uptake among individuals at risk for HIV infection. Despite a growing number of studies exploring processes for incorporating PrEP into the ED setting, such studies are small-scale and time limited. Models providing prescribing PrEP in the ED show higher initiation rates than post-discharge engagement models. Electronic health record (EHR)-based HIV screening is valuable, but post-ED linkage rates are low. Our findings emphasize the need to establish best practices for initiating and supporting prevention effective PrEP use in the ED setting.
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Serviço Hospitalar de Emergência , Infecções por HIV , Programas de Rastreamento , Profilaxia Pré-Exposição , Humanos , Infecções por HIV/prevenção & controle , Infecções por HIV/diagnóstico , Serviço Hospitalar de Emergência/estatística & dados numéricos , Estados Unidos , Programas de Rastreamento/estatística & dados numéricos , Fármacos Anti-HIV/administração & dosagem , Fármacos Anti-HIV/uso terapêutico , MasculinoRESUMO
BACKGROUND: This study aims to examine the treatment patterns of end-stage kidney disease (ESKD) among SLE patients and to compare the outcome of hemodialysis (HD) and peritoneal dialysis (PD). METHODS: SLE patients identified from the national administration dataset in 2005-2021 were linked to the Australia and New Zealand Dialysis and Transplant Registry to identify ESKD cases. The adjusted odds ratio of having PD instead of HD as the first treatment for ESKD for Asian, Maori, and Pacific compared with European/others was estimated with the logistic regression model. The adjusted hazards ratio of all-cause mortality for patients having PD first compared with HD first was calculated. RESULTS: Two hundred ten ESKD patients with SLE were identified. Two thirds (137/210) of the ESKD patients had HD as the first treatment, and one third (68, 32.4%) had PD first. Around 60% of Asian patients had PD as the first treatment, compared with 30% in other ethnic groups. The adjusted odds ratio of having PD as the first treatment for Asian patients compared with European/others was 3.00 (95% confidence interval, 1.16-7.73). The adjusted hazards ratio of all-cause mortality for patients in the PD group compared with the HD group was 0.60 (95% confidence interval, 0.37-0.97). CONCLUSIONS: Asian patients with ESKD were more likely to have PD as the first treatment. The optimal dialysis type for ESKD patients with SLE might be different from ESKD patients caused by other diseases. ESKD patients with SLE receiving PD first had superior outcomes than patients receiving HD first.
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Falência Renal Crônica , Lúpus Eritematoso Sistêmico , Diálise Peritoneal , Diálise Renal , Humanos , Falência Renal Crônica/terapia , Falência Renal Crônica/mortalidade , Falência Renal Crônica/epidemiologia , Feminino , Masculino , Lúpus Eritematoso Sistêmico/complicações , Lúpus Eritematoso Sistêmico/epidemiologia , Nova Zelândia/epidemiologia , Austrália/epidemiologia , Pessoa de Meia-Idade , Diálise Peritoneal/métodos , Adulto , Sistema de Registros , Resultado do TratamentoRESUMO
Gammaherpesviruses (GHVs) are lymphotropic tumor viruses with a biphasic infectious cycle. Lytic replication at the primary site of infection is necessary for GHVs to spread throughout the host and establish latency in distal sites. Dissemination is mediated by infected B cells that traffic hematogenously from draining lymph nodes to peripheral lymphoid organs, such as the spleen. B cells serve as the major reservoir for viral latency, and it is hypothesized that periodic reactivation from latently infected B cells contributes to maintaining long-term chronic infection. While fundamentally important to an understanding of GHV biology, aspects of B cell infection in latency establishment and maintenance are incompletely defined, especially roles for lytic replication and reactivation in this cell type. To address this knowledge gap and overcome limitations of replication-defective viruses, we generated a recombinant murine gammaherpesvirus 68 (MHV68) in which ORF50, the gene that encodes the essential immediate-early replication and transcription activator protein (RTA), was flanked by loxP sites to enable conditional ablation of lytic replication by ORF50 deletion in cells that express Cre recombinase. Following infection of mice that encode Cre in B cells with this virus, splenomegaly and viral reactivation from splenocytes were significantly reduced; however, the number of latently infected splenocytes was equivalent to WT MHV68. Despite ORF50 deletion, MHV68 latency was maintained over time in spleens of mice at levels approximating WT, reactivation-competent MHV68. Treatment of infected mice with lipopolysaccharide (LPS), which promotes B cell activation and MHV68 reactivation ex vivo, yielded equivalent increases in the number of latently infected cells for both ORF50-deleted and WT MHV68, even when mice were simultaneously treated with the antiviral drug cidofovir to prevent reactivation. Together, these data demonstrate that productive viral replication in B cells is not required for MHV68 latency establishment and support the hypothesis that B cell proliferation facilitates latency maintenance in vivo in the absence of reactivation. IMPORTANCE Gammaherpesviruses establish lifelong chronic infections in cells of the immune system and place infected hosts at risk for developing lymphomas and other diseases. It is hypothesized that gammaherpesviruses must initiate acute infection in these cells to establish and maintain long-term infection, but this has not been directly tested. We report here the use of a viral genetic system that allows for cell-type-specific deletion of a viral gene that is essential for replication and reactivation. We employ this system in an in vivo model to reveal that viral replication is not required to initiate or maintain infection within B cells.
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Linfócitos B , Infecções por Herpesviridae , Proteínas Imediatamente Precoces , Ativação Viral , Animais , Linfócitos B/virologia , Gammaherpesvirinae/genética , Gammaherpesvirinae/fisiologia , Infecções por Herpesviridae/virologia , Proteínas Imediatamente Precoces/genética , Camundongos , Camundongos Endogâmicos C57BL , Latência Viral , Replicação ViralRESUMO
OBJECTIVES: This study aims to assess the mortality of systemic lupus erythematosus (SLE) patients and examine whether there are variations by subgroup. METHODS: SLE patients from 2005-2021 were identified from the national administrative datasets. The underlying causes of death were examined. Standardised mortality ratio (SMR) was estimated to compare the relative rate of observed deaths in SLE patients to expected deaths in the general population. The hazard ratios (HR) and 95% confidence intervals (CI) of all-cause mortality and SLE specific mortality by ethnicity were estimated after adjustment for age using a Cox proportional hazards model. RESULTS: Of the 2,802 patients included for analysis, 699 (24.9%) died with 209 (29.9%) SLE deaths. The age-standardised mortality rate of SLE was 0.29 per 100 000 for women and 0.05 for men. The mean age at death was 65.3 ± 17.1 years. Younger patients were more likely to have SLE as the underlying cause of death, from 78.9% for those under 20 years old to 18.7% for those aged 70-79 years. Compared with the general population, SLE patients were four times more likely to die (SMR: 4.0; 95% CI: 3.7-4.3). Young patients had higher SMRs than older patients. Maori had worse all-cause mortality (HR: 1.72; 95% CI: 1.10-2.67) and SLE specific mortality (HR: 2.60; 95% CI: 1.29-5.24) than others. CONCLUSIONS: The outcomes of SLE in New Zealand were still very poor compared with the general population. Maori with SLE had worse survival than others. Further research is needed to identify the reasons to this disparity.
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OBJECTIVES: PsA is a heterogeneous disease that impacts many aspects of social and mental life, including quality of life. Risankizumab, an antagonist specific for IL-23, is currently under investigation for the treatment of adults with active PsA. This study evaluated the impact of risankizumab vs placebo on health-related quality of life (HRQoL) and other patient-reported outcomes (PROs) among patients with active PsA and inadequate response or intolerance to conventional synthetic DMARD (csDMARD-IR) in the KEEPsAKE 1 trial. METHODS: Adult patients with active PsA (n = 964) were randomized (1:1) to receive risankizumab 150 mg or placebo. PROs assessed included the 36-Item Short-Form Health Survey (SF-36, v2), Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-Fatigue), EuroQoL-5 Dimension-5 Level (EQ-5D-5L), Patient's Assessment of Pain, Patient's Global Assessment (PtGA) of Disease Activity, and Work Productivity and Activity Impairment-PsA (WPAI-PsA) questionnaire. Least squares (LS) mean change from baseline at week 24 was compared between risankizumab and placebo. RESULTS: At week 24, differences between groups were observed using LS mean changes from baseline in SF-36 physical component summary and mental component summary; FACIT-Fatigue; EQ-5D-5L; Patient's Assessment of Pain; PtGA; all eight SF-36 domains (all nominal P < 0.001); and the WPAI-PsA domains of impairment while working (presenteeism), overall work impairment and activity impairment (all nominal P < 0.01). CONCLUSION: Risankizumab treatment resulted in greater improvements in HRQoL, fatigue, pain and work productivity in patients with active PsA who have csDMARD-IR, when compared with placebo. TRIAL REGISTRATION: ClinicalTrials.gov, https://clinicaltrials.gov, NCT03675308.
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Antirreumáticos , Artrite Psoriásica , Adulto , Humanos , Artrite Psoriásica/tratamento farmacológico , Qualidade de Vida , Resultado do Tratamento , Método Duplo-Cego , Antirreumáticos/uso terapêutico , Dor/tratamento farmacológico , Medidas de Resultados Relatados pelo Paciente , Fadiga/tratamento farmacológico , Fadiga/etiologiaRESUMO
OBJECTIVE: PsA is a chronic disease with heterogeneous clinical manifestations requiring treatment options with long-term efficacy and safety. In this follow-up analysis, the 52-week efficacy and safety of risankizumab 150 mg in patients with active PsA who had previous inadequate response/intolerance to one or more conventional synthetic DMARDs (csDMARD-IR) were evaluated. METHODS: KEEPsAKE 1 is an ongoing, global, phase 3 study with a 24-week, double-blind, placebo-controlled period (period 1) and an open-label extension period (period 2). In period 1, eligible patients were randomized 1:1 to receive subcutaneous risankizumab 150 mg or placebo at weeks 0, 4 and 16. At week 24 (period 2), all continuing patients received open-label risankizumab 150 mg every 12 weeks through week 208. RESULTS: At week 24, 57.3% of risankizumab-treated patients (n = 483) achieved ≥20% improvement in ACR criteria (ACR20) vs 33.5% of placebo-treated patients (n = 481; P < 0.001). At week 52, 70.0% of patients who were randomized to receive continuous risankizumab therapy and 63.0% of patients who were randomized to receive placebo in period 1 and then receive risankizumab at week 24 achieved ACR20. Similar result trends were observed for other efficacy measures. Risankizumab was well tolerated through 52 weeks of treatment with a consistent safety profile from week 24 through week 52. CONCLUSION: In patients with active PsA who were csDMARD-IR, continuous risankizumab treatment demonstrated robust long-term efficacy and was well tolerated through 52 weeks of treatment. TRIAL REGISTRATION: ClinicalTrials.gov, http://clinicaltrials.gov, KEEPsAKE1, NCT03675308.
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Antirreumáticos , Artrite Psoriásica , Humanos , Artrite Psoriásica/tratamento farmacológico , Artrite Psoriásica/induzido quimicamente , Anticorpos Monoclonais/efeitos adversos , Antirreumáticos/efeitos adversos , Injeções Subcutâneas , Método Duplo-Cego , Resultado do Tratamento , Índice de Gravidade de DoençaRESUMO
OBJECTIVES: This study aims to provide updated data on the incidence and prevalence of systemic lupus erythematosus (SLE) in New Zealand and to examine the difference between ethnic groups. METHODS: We identified the SLE cases from the national administrative datasets. The date of first identification of SLE was the earliest date of a related inpatient event or the earliest date of a related outpatient event. The crude incidence and prevalence of SLE in 2010-2021 were estimated by gender, age group and ethnicity. The WHO (World Health Organization) age-standardised rate (ASR) of incidence and prevalence of SLE was calculated, after stratifying the cases by ethnicity and gender. RESULTS: The average ASR of incidence and prevalence of SLE in 2010-2021 was 2.1 and 42.1 per 100,000 people in New Zealand. The average ASR of incidence for women was 3.4 per 100,000 for women and 0.6 for men. It was highest for Pacific women (9.8), followed by Asian women (5.3) and Maori women (3.6), and was lowest for Europeans/Others (2.1). The average ASR of prevalence was 65.2 per 100,000 for women and 8.5 for men. It was highest for Pacific women (176.2), followed by Maori women (83.7) and Asian women (72.2), and was lowest for Europeans/Others (48.5). The ASR of prevalence of SLE has been increasing slightly over time: from 60.2 in 2010 to 66.1 per 100,000 in 2021 for women and from 7.6 in 2010 to 8.8 per 100,000 in 2021 for men. CONCLUSION: The incidence and prevalence of SLE in New Zealand were comparable to the rates in European countries. Pacific people had the highest incidence and prevalence of SLE, more than three times the rates for Europeans/others. The high incidence of SLE in Maori and Asian people also has implications for the future as these populations increase as a proportion to the total population.
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Lúpus Eritematoso Sistêmico , Feminino , Humanos , Masculino , Incidência , Lúpus Eritematoso Sistêmico/epidemiologia , Lúpus Eritematoso Sistêmico/etnologia , Povo Maori , Nova Zelândia/epidemiologia , Prevalência , Povo Asiático , População das Ilhas do PacíficoRESUMO
BACKGROUND: Palliative care specialists are experts in conducting advance care planning (ACP) but are a limited resource. Oncology nurses often have special relationships with their patients and thus may be poised to provide primary palliative care. We sought to determine the impact of a nurse-led primary palliative care intervention on ACP uptake among patients with advanced cancer. METHODS: We performed a secondary analysis of a cluster randomized controlled trial examining the impact of nurse-based primary palliative care. In the parent trial, patients with advanced cancer received either monthly primary palliative care visits with trained nurses within their cancer center or standard care. Nurses in the intervention arm received special training in ACP. ACP uptake was assessed at enrollment and 3 months later evaluating (1) whether an end-of-life conversation (EOLC) occurred with one's oncologist, and (2) completion of an advance directive (AD). Multivariable logistic regression tested differences in ACP uptake by treatment arm adjusted for age, religious importance, education, time with current oncologist, and performance status. RESULTS: Of 672 patients enrolled, 182/336 (54%) patients in the intervention arm and 196/336 (58%) in the standard care arm lacked an EOLC at baseline and completed the 3-month assessment. Of those, 82/182 (45.1%) patients in the intervention arm and 29/196 (14.8%) in the standard care arm reported having an EOLC at 3 months (adjusted odds ratio, 5.28; 95% CI, 3.10-8.97; P<.001). Similarly, 111/336 (33%) patients in the intervention arm and 105/336 (31%) in the standard care arm lacked an AD at baseline and completed the 3-month assessment. Of those, 48/111 (43.2%) patients in the intervention arm and 19/105 (18.1%) in the standard care arm completed an AD over the study period (adjusted odds ratio, 3.68; 95% CI, 1.89-7.16; P<.001). CONCLUSIONS: Nurse-led primary palliative care increased ACP uptake among patients with advanced cancer. Training oncology nurses embedded within community cancer centers to provide primary palliative care may help improve ACP access.
Assuntos
Planejamento Antecipado de Cuidados , Neoplasias , Humanos , Cuidados Paliativos , Neoplasias/terapia , OncologiaRESUMO
BACKGROUND: Whether surrogate decision makers regret decisions about the use of life support for incapacitated, critically ill patients remain uncertain. We sought to determine the prevalence of decision regret among surrogates of adult ICU patients and identify factors that influence regret. METHODS: We conducted a secondary analysis of data from the PARTNER 2 trial, which tested a family support intervention for surrogates of critically ill adults. At 6-month follow-up, surrogates rated their regret about life support decisions using the Decision Regret Scale (DRS), scored from 0 to 100, with higher scores indicating more regret. We used multiple linear regression to identify covariates associated with decision regret based on a psychological construct of regret. We constructed two models using the full cohort; model 1 included patient outcomes; model 2 focused on covariates known at the time of ICU decision-making. Subgroup analyses were also conducted based on patient survival status at hospital discharge and 6-month follow-up. RESULTS: 748 of 848 surrogates had complete DRS data. The median (IQR) DRS score was 15 (0, 25). Overall, 54% reported mild regret (DRS 5-25), 19% moderate-strong regret (DRS 30-100), and 27% no regret (DRS 0). Poor patient outcome at 6 months (death or severe functional dependence) was associated with more regret in model 1 (ß 10.1; 95% C.I. 3.2, 17.0). In model 2, palliative care consultation (3.0; 0.1, 5.9), limitations in life support (LS) prior to death (6.3; 3.1, 9.4) and surrogate black race (6.3; 0.3, 12.3) were associated with more regret. Other modulators of regret in subgroup analyses included surrogate age and education level, surrogate-patient relationship, death in hospital (compared to the post-discharge period), and code status at time of ICU admission. CONCLUSIONS: One in five ICU surrogate decision makers experience moderate to strong regret about life support decisions in ICU. Poor patient outcomes are linked to more regret. Decisions to limit life support prior to patient death may also increase regret. Future studies are needed to understand how regret relates to decision quality and how to lessen lasting regret.
Assuntos
Estado Terminal , Tomada de Decisões , Adulto , Humanos , Estado Terminal/epidemiologia , Estado Terminal/terapia , Prevalência , Assistência ao Convalescente , Unidades de Terapia Intensiva , Alta do PacienteRESUMO
BACKGROUND: Shared decision-making is a joint process where patients, or their surrogates, and clinicians make health choices based on evidence and preferences. We aimed to determine the extent and predictors of shared decision-making for goals-of-care discussions for critically ill neurological patients, which is crucial for patient-goal-concordant care but currently unknown. METHODS: We analyzed 72 audio-recorded routine clinician-family meetings during which goals-of-care were discussed from seven US hospitals. These occurred for 67 patients with 72 surrogates and 29 clinicians; one hospital provided 49/72 (68%) of the recordings. Using a previously validated 10-element shared decision-making instrument, we quantified the extent of shared decision-making in each meeting. We measured clinicians' and surrogates' characteristics and prognostic estimates for the patient's hospital survival and 6-month independent function using post-meeting questionnaires. We calculated clinician-family prognostic discordance, defined as ≥ 20% absolute difference between the clinician's and surrogate's estimates. We applied mixed-effects regression to identify independent associations with greater shared decision-making. RESULTS: The median shared decision-making score was 7 (IQR 5-8). Only 6% of meetings contained all 10 shared decision-making elements. The most common elements were "discussing uncertainty"(89%) and "assessing family understanding"(86%); least frequent elements were "assessing the need for input from others"(36%) and "eliciting the context of the decision"(33%). Clinician-family prognostic discordance was present in 60% for hospital survival and 45% for 6-month independent function. Univariate analyses indicated associations between greater shared decision-making and younger clinician age, fewer years in practice, specialty (medical-surgical critical care > internal medicine > neurocritical care > other > trauma surgery), and higher clinician-family prognostic discordance for hospital survival. After adjustment, only higher clinician-family prognostic discordance for hospital survival remained independently associated with greater shared decision-making (p = 0.029). CONCLUSION: Fewer than 1 in 10 goals-of-care clinician-family meetings for critically ill neurological patients contained all shared decision-making elements. Our findings highlight gaps in shared decision-making. Interventions promoting shared decision-making for high-stakes decisions in these patients may increase patient-value congruent care; future studies should also examine whether they will affect decision quality and surrogates' health outcomes.
Assuntos
Tomada de Decisões , Objetivos , Humanos , Estado Terminal/epidemiologia , Estado Terminal/terapia , Prevalência , Unidades de Terapia IntensivaRESUMO
Near infrared spectroscopy is routinely used in the noninvasive monitoring of cerebral and somatic regional oxygen saturation (rSO2) in pediatric patients following surgery for congenital heart disease. We sought to evaluate the association of a bedside rSO2 thought algorithm with clinical outcomes in a cohort of pediatric patients following cardiac surgery. This was a single-center retrospective cohort study of patients admitted following cardiac surgery over a 42-month period. The intervention was the implementation of an rSO2 thought algorithm, the primary goal of which was to supply bedside providers with a thought aide to help identify, and guide response to, changes in rSO2 in post-operative cardiac surgical patients. Surgical cases were stratified into two 18-month periods of observation, pre- and post-intervention allowing for a 6-month washout period during implementation of the thought algorithm. Clinical outcomes were compared between pre- and post-intervention periods. There were 434 surgical cases during the period of study. We observed a 27% relative risk reduction in our standardized mortality rate (0.61 to 0.48, p = 0.01) between the pre- and post-intervention periods. We did not observe differences in other post-operative clinical outcomes such as ventilator free days or post-operative ICU length of stay. Providing frontline clinical staff with education and tools, such as a bedside rSO2 thought algorithm, may aide in the earlier detection of imbalance between oxygen delivery and consumption and may contribute to improved patient outcomes.