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Creutzfeldt-Jacob disease (CJD) is a rare neurodegenerative disorder that typically progresses rapidly and unrelentingly. Providing comfort and support for patients with CJD presents significant challenges for clinicians and caregivers. In comparison to the more typical disease progression experienced in dementias, the trajectory of CJD differs significantly. This case report delves into these differences and emphasizes the need for the development of guidelines for healthcare professionals and families who care for individuals with CJD. Such guidelines would help facilitate better care and support for patients and their families throughout the course of this devastating illness.
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This study aimed to evaluate the prevalence of and risk factors for coxa vara deformity in patients with fibrous dysplasia/McCune-Albright syndrome (FD/MAS). This study was conducted at the National Institutes of Health and Leiden University Medical Center. All patients with any subtype of FD/MAS, FD involving the proximal femur, one or more X-rays available and age <30 years were included. X-rays were scored for the neck-shaft angle (NSA). Varus deformity was defined as NSA <110 degrees or >10 degrees below age-specific values. Risk factors for deformity were assessed by nested case-control analysis, comparing patients and femurs with and without deformity, and by linear mixed effects model, modeling temporal NSA decrease (the natural course of the NSA) in non-operated femurs with two or more X-rays. Assessed variables included growth hormone excess, hyperthyroidism, hypophosphatemia, >25% of the femur affected, calcar destruction, radiolucency, and bilateral involvement. In total 180 patients were studied, 57% female. Mean ± SD baseline age was 13.6 ± 7.5 years; median follow-up 5.4 (interquartile range [IQR], 11.1) years. Sixty-three percent (63%) were diagnosed with MAS. A total of 94 patients were affected bilaterally; 274 FD femurs were analyzed; 99 femurs had a varus deformity (36%). In the nested case-control analysis, risk factors were as follows: presence of MAS (p < 0.001), hyperthyroidism (p < 0.001), hypophosphatemia (p < 0.001), high percentage of femur affected (p < 0.001), and calcar destruction (p < 0.001). The linear mixed effects model included 114 femurs, identified risk factors were: growth hormone excess (ß = 7.2, p = 0.013), hyperthyroidism (ß = 11.3, p < 0.001), >25% of the femur affected (ß = 13.2, p = 0.046), calcar destruction (ß = 8.3, p = 0.004), radiolucency (ß = 3.9, p = 0.009), and bilateral involvement (ß = 9.8, p = 0.010). Visual inspection of the graph of the model demonstrated most progression of deformity if NSA <120 degrees with age < 15 years. In conclusion, in tertiary care centers, the prevalence of FD/MAS coxa vara deformity was 36%. Risk factors included presence of MAS, high percentage of femur affected, calcar destruction, radiolucency, NSA <120 degrees and age < 15 years. © 2023 The Authors. Journal of Bone and Mineral Research published by Wiley Periodicals LLC on behalf of American Society for Bone and Mineral Research (ASBMR).
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Coxa Vara , Displasia Fibrosa Óssea , Displasia Fibrosa Poliostótica , Hipertireoidismo , Hipofosfatemia , Humanos , Feminino , Adulto , Criança , Adolescente , Adulto Jovem , Masculino , Displasia Fibrosa Poliostótica/complicações , Displasia Fibrosa Poliostótica/diagnóstico por imagem , Displasia Fibrosa Poliostótica/epidemiologia , Prevalência , Fêmur/diagnóstico por imagemRESUMO
BACKGROUND: Extracorporeal membrane oxygenation (ECMO) combined with COVID-19 presents challenges (eg, isolation, anticipatory grief) for patients and families. OBJECTIVE: To (1) describe characteristics and outcomes of patients with COVID-19 receiving ECMO, (2) develop a practice improvement strategy to implement early, semistructured palliative care communication in ECMO acknowledgment meetings with patients' families, and (3) examine family members' experiences as recorded in clinicians' notes during these meetings. METHODS: Descriptive observation of guided, in-depth meetings with families of patients with COVID-19 receiving ECMO, as gathered from the electronic medical record of a large urban academic medical center. Most meetings were held within 3 days of initiation of ECMO. RESULTS: Forty-three patients received ECMO between March and October 2020. The mean patient age was 44 years; 63% of patients were Hispanic/Latino, 19% were Black, and 7% were White. Documentation of the ECMO acknowledgment meeting was completed for 60% of patients. Fifty-six percent of patients survived to hospital discharge. Family discussions revealed 7 common themes: hope, reliance on faith, multiple family members with COVID-19, helping children adjust to a new normal, visitation restrictions, gratitude for clinicians and care, and end-of-life discussions. CONCLUSION: Early and ongoing provision of palliative care is feasible and useful for highlighting a range of experiences related to COVID-19. Palliative care is also useful for educating patients and families on the benefits and limitations of ECMO therapy.
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COVID-19 , Oxigenação por Membrana Extracorpórea , Criança , Humanos , Adulto , Cuidados Paliativos , COVID-19/terapia , Pacientes , Comunicação , Estudos RetrospectivosRESUMO
Fibrous dysplasia/McCune-Albright syndrome (FD/MAS) is a rare bone and endocrine disorder arising along a broad spectrum. Long-bone fractures are a common, painful, and potentially disabling complication. However, fracture prevalence and risk factors have not been well-established, making it difficult to predict which patients are at risk for a severe course. Clinical and imaging data were reviewed from two large, well-phenotyped cohorts (National Institutes of Health [NIH] in the United States and the Leiden University Medical Center [LUMC] in the Netherlands) to identify long-bone fractures at FD sites. Skeletal burden score was quantified using bone scintigraphy. Multiple linear regressions were performed to identify clinical associations with fractures. A total of 419 patients were included (186 NIH, 233 LUMC); 194 (46%) had MAS endocrinopathies. Median age at last follow-up was 30.2 years (range 3.2-84.6, interquartile range [IQR] 25.5), and median skeletal burden score was 16.6 (range 0-75, IQR 33). A total of 48 (59%) patients suffered one or more lifetime fracture (median 1, range 0-70, IQR 4). Median age at first fracture was 8 years (range 1-76, IQR 10). Fracture rates peaked between 6 and 10 years of age and decreased thereafter. Lifetime fracture rate was associated with skeletal burden score (ß = 0.40, p < 0.01) and MAS hyperthyroidism (ß = 0.22, p = 0.01). Younger age at first fracture was associated with skeletal burden score (ß = -0.26, p = 0.01) and male sex (ß = -0.23, p = 0.01). Both skeletal burden score >25 and age at first fracture ≤7 years were associated with a higher total number of lifetime fractures (median 4, range 1-70, IQR 5 versus median 1, range 1-13, IQR 1) (p < 0.01). In conclusion, higher skeletal burden score and MAS hyperthyroidism are associated with long-bone fractures in FD/MAS. Both skeletal burden score ≥25 and age at first fracture ≤7 years are associated with a higher lifetime long-bone fracture risk and may predict a more severe clinical course. These results may allow clinicians to identify FD/MAS patients at risk for severe disease who may be candidates for early therapeutic interventions. © 2021 American Society for Bone and Mineral Research (ASBMR). This article has been contributed to by US Government employees and their work is in the public domain in the USA.
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Displasia Fibrosa Óssea , Displasia Fibrosa Poliostótica , Fraturas Ósseas , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Criança , Pré-Escolar , Displasia Fibrosa Óssea/complicações , Displasia Fibrosa Poliostótica/complicações , Displasia Fibrosa Poliostótica/diagnóstico por imagem , Displasia Fibrosa Poliostótica/epidemiologia , Fraturas Ósseas/complicações , Fraturas Ósseas/diagnóstico por imagem , Fraturas Ósseas/epidemiologia , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Prevalência , Fatores de Risco , Adulto JovemRESUMO
Embalming of the dead is more common in the United States than anywhere else in the world. Battles far from home during the Civil War with concern for contagion from dead bodies being shipped home compelled President Lincoln to direct the troops to use embalming to allow the return of the Union dead to their homes. Viewings were common with war heroes and culminated with the viewing of Lincoln himself. In the 20th century embalming became a tradition despite substantial evidence indicating environmental and occupational hazards related to embalming fluids and carbon dioxide generated from manufacturing steel coffins before placing in concrete burial vaults. Embalming is promoted and considered helpful to the grieving process. Embalmers are expected to produce an illusion of rest, an image that in some ways disguises death for the benefit of mourners. The dead are carefully displayed in a condition of liminal repose where the 'true' condition is hidden, and death is removed from the actual event. In this paper we highlight the spiritual and cultural complexities of embalming related issues. We propose an innovative process to empower people facing serious illness, and their families to make shared and informed decisions, especially when death is an expected outcome.
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Embalsamamento , Pesar , Cadáver , Humanos , Estados UnidosRESUMO
BACKGROUND: During the first wave of the coronavirus disease 2019 (COVID-19) pandemic, older patients had an increased risk of hospitalisation and death. Reports on the association of frailty with poor outcome have been conflicting. OBJECTIVE: The aim of the present study was to investigate the independent association between frailty and in-hospital mortality in older hospitalised COVID-19 patients in the Netherlands. METHODS: This was a multicentre retrospective cohort study in 15 hospitals in the Netherlands, including all patients aged ≥70 years, who were hospitalised with clinically confirmed COVID-19 between February and May 2020. Data were collected on demographics, co-morbidity, disease severity and Clinical Frailty Scale (CFS). Primary outcome was in-hospital mortality. RESULTS: A total of 1,376 patients were included (median age 78 years (interquartile range 74-84), 60% male). In total, 499 (38%) patients died during hospital admission. Parameters indicating presence of frailty (CFS 6-9) were associated with more co-morbidities, shorter symptom duration upon presentation (median 4 versus 7 days), lower oxygen demand and lower levels of C-reactive protein. In multivariable analyses, the CFS was independently associated with in-hospital mortality: compared with patients with CFS 1-3, patients with CFS 4-5 had a two times higher risk (odds ratio (OR) 2.0 (95% confidence interval (CI) 1.3-3.0)) and patients with CFS 6-9 had a three times higher risk of in-hospital mortality (OR 2.8 (95% CI 1.8-4.3)). CONCLUSIONS: The in-hospital mortality of older hospitalised COVID-19 patients in the Netherlands was 38%. Frailty was independently associated with higher in-hospital mortality, even though COVID-19 patients with frailty presented earlier to the hospital with less severe symptoms.
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COVID-19/mortalidade , Idoso Fragilizado/estatística & dados numéricos , Fragilidade/complicações , Hospitalização/estatística & dados numéricos , Pandemias/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Feminino , Fragilidade/diagnóstico , Mortalidade Hospitalar , Humanos , Masculino , Países Baixos/epidemiologia , Estudos Retrospectivos , SARS-CoV-2RESUMO
CONTEXT: Fibrous dysplasia/McCune-Albright syndrome (FD/MAS) is a rare bone and endocrine disorder resulting in fractures, pain, and disability. There are no targeted or effective therapies to alter the disease course. Disease arises from somatic gain-of-function variants at the R201 codon in GNAS, replacing arginine by either cysteine or histidine. The relative pathogenicity of these variants is not fully understood. OBJECTIVE: This work aimed 1) to determine whether the most common GNAS variants (R201C and R201H) are associated with a specific clinical phenotype, and 2) to determine the prevalence of the most common GNAS variants in a large patient cohort. METHODS: This retrospective cross-sectional analysis measured the correlation between genotype and phenotype characterized by clinical, biochemical, and radiographic data. RESULTS: Sixty-one individuals were genotyped using DNA extracted from tissue or circulating cell-free DNA. Twenty-two patients (36.1%) had the R201C variant, and 39 (63.9%) had the R201H variant. FD skeletal disease burden, hypophosphatemia prevalence, fracture incidence, and ambulation status were similar between the 2 groups. There was no difference in the prevalence of endocrinopathies, ultrasonographic gonadal or thyroid abnormalities, or pancreatic involvement. There was a nonsignificant association of cancer with the R201H variant. CONCLUSION: There is no clear genotype-phenotype correlation in patients with the most common FD/MAS pathogenic variants. The predominance of the R201H variant observed in our cohort and reported in the literature indicates it is likely responsible for a larger burden of disease in the overall population of patients with FD/MAS, which may have important implications for the future development of targeted therapies.
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Cromograninas/genética , Displasia Fibrosa Óssea/genética , Displasia Fibrosa Poliostótica/genética , Subunidades alfa Gs de Proteínas de Ligação ao GTP/genética , Adolescente , Adulto , Substituição de Aminoácidos , Criança , Pré-Escolar , Estudos Transversais , Feminino , Displasia Fibrosa Óssea/epidemiologia , Displasia Fibrosa Óssea/patologia , Displasia Fibrosa Poliostótica/epidemiologia , Displasia Fibrosa Poliostótica/patologia , Frequência do Gene , Estudos de Associação Genética , Predisposição Genética para Doença , Humanos , Masculino , Mutação de Sentido Incorreto , Prevalência , Estudos Retrospectivos , Índice de Gravidade de Doença , Adulto JovemRESUMO
BACKGROUND: Systemic lupus erythematosus (SLE) is regarded as a prototype autoimmune disease because it can serve as a means for studying differences between ethnic minorities and sex. Traditionally, all Hispanics have been bracketed within the same ethnic group, but there are differences between Hispanics from Spain and those from Latin America, not to mention other Spanish-speaking populations. OBJECTIVES: This study aimed to determine the demographic and clinical characteristics, severity, activity, damage, mortality and co-morbidity of SLE in Hispanics belonging to the two ethnic groups resident in Spain, and to identify any differences. METHODS: This was an observational, multi-centre, retrospective study. The demographic and clinical variables of patients with SLE from 45 rheumatology units were collected. The study was conducted in accordance with Good Clinical Practice guidelines. Hispanic patients from the registry were divided into two groups: Spaniards or European Caucasians (EC) and Latin American mestizos (LAM). Comparative univariate and multivariate statistical analyses were carried out. RESULTS: A total of 3490 SLE patients were included, 90% of whom were female; 3305 (92%) EC and 185 (5%) LAM. LAM patients experienced their first lupus symptoms four years earlier than EC patients and were diagnosed and included in the registry younger, and their SLE was of a shorter duration. The time in months from the first SLE symptoms to diagnosis was longer in EC patients, as were the follow-up periods. LAM patients exhibited higher prevalence rates of myositis, haemolytic anaemia and nephritis, but there were no differences in histological type or serositis. Anti-Sm, anti-Ro and anti-RNP antibodies were more frequently found in LAM patients. LAM patients also had higher levels of disease activity, severity and hospital admissions. However, there were no differences in damage index, mortality or co-morbidity index. In the multivariate analysis, after adjusting for confounders, in several models the odds ratio (95% confidence interval) for a Katz severity index >3 in LAM patients was 1.45 (1.038-2.026; p = 0.02). This difference did not extend to activity levels (i.e. SLEDAI >3; 0.98 (0.30-1.66)). CONCLUSION: SLE in Hispanic EC patients showed clinical differences compared to Hispanic LAM patients. The latter more frequently suffered nephritis and higher severity indices. This study shows that where lupus is concerned, not all Hispanics are equal.
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Progressão da Doença , Lúpus Eritematoso Sistêmico/etnologia , Feminino , Humanos , América Latina/etnologia , Lúpus Eritematoso Sistêmico/fisiopatologia , Masculino , Sistema de Registros , Estudos Retrospectivos , Índice de Gravidade de Doença , Espanha/epidemiologia , População Branca/estatística & dados numéricosRESUMO
BACKGROUND: MicroRNAs (miRNAs) gene expression regulators are altered in psoriasis suggesting their role in the pathogenesis. OBJECTIVE: To study expression changes of inflammation and toll-like receptor (TLR)-related miRNAs, miRNA-155, let-7i, miRNA-21, miRNA-146a and miRNA-223 in peripheral mononuclear cells (PBMCs) and miRNA-21, miRNA-146a and miRNA-223 in plasma, from chronic plaque-type psoriasis patients who were treatment-naive or had undergone a washout period (n = 11). MiRNAs were evaluated at baseline and after 11 (9-12) months [median (25th-75th percentile range)] of methotrexate (MTX) or topical (betamethasone plus calcipotriene) treatment. METHODS: MiRNA expression was analysed with quantitative real-time reverse transcription-polymerase chain reaction. Matched controls were studied. RESULTS: Psoriasis patients presented, at baseline, increased expression of miRNA-155, let-7i, miRNA-146a, miRNA-21 and miRNA-223 in PBMCs, plus miRNA-21, miRNA-146a and miRNA-223 in plasma. Receiver-operator characteristic (ROC) curve analysis and area under the curve (AUC) showed that expression of these miRNAs have the potential to distinguish between psoriasis and controls. At baseline, miRNA-155 expression in PBMCs correlated with Psoriasis Area Severity Index (PASI) [12 (8-14)] (Spearman r: 0.7140, P < 0.05) suggesting a role in psoriasis. After MTX or topical treatment, reduction in PASI was observed [87.5% (75-100)]; miRNA-155 expression in PBMCs decreased; plasma miRNA-21, miRNA-146a and miRNA-223 were down-regulated. ROC analysis showed that miRNA-155 expression in PBMCs from psoriasis patients have the potential to distinguish between patients' samples at baseline and after treatment (AUC: 0.942, sensitivity: 0.91; specificity: 0.91 values; maximum likelihood ratio =10). After treatment, miRNA-146a expression in PBMCs increased; miRNA-155/miRNA-146a ratio decreased, suggestive of a regulatory feedback; let-7i expression decreased; miRNA-21 and miRNA-223 remained elevated. CONCLUSION: In this exploratory study, psoriasis patients presented increased expression of miRNA-155 in PBMCs that correlated with PASI and decreased with disease remission. MiRNA-21, miRNA-146a and miRNA-223 in PBMCs and plasma were increased at baseline and differentially modulated, underscoring different roles of TLR-related miRNAs in psoriasis.
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MicroRNAs/sangue , Monócitos/metabolismo , Psoríase/sangue , Adulto , Feminino , Humanos , MasculinoRESUMO
BACKGROUND: The Multimorbidity (MM) Index predicts the prognosis of patients from their diagnostic history. In contrast to existing approaches with broad diagnostic categories, it treats each diagnosis as a separate independent variable using individual International Classification of Disease, Revision 9 (ICD-9) codes. OBJECTIVE: This paper describes the MM Index, reviews the published data on its accuracy, and provides procedures for implementing the Index within electronic health record (EHR) systems. Methods: The MM Index was tested on various patient populations by using data from the United States Department of Veterans Affairs data warehouse and claims data within the Healthcare Cost and Utilization Project of the Agency for Health Care Research and Quality. RESULTS: In cross-validated studies, the MM Index outperformed prognostic indices based on physiological markers, such as CD4 cell counts in HIV/AIDS, HbAlc levels in diabetes, ejection fractions in heart failure, or the 13 physiological markers commonly used for patients in intensive care units. When predicting the prognosis of nursing home patients by using the cross-validated area under a receiver operating characteristic (ROC) curve, the MM Index was 15 percent outperformed the Quan variant of the Charlson Index, 27 percent more accurate than the Deyo variant of the Charlson Index, and 22 percent more accurate than the von Walraven variant of the Elixhauser Index. For patients in intensive care units, the MM Index was 13 percent outperformed the cross-validated area under ROC associated with Elixhauser's categories. The MM Index also demonstrated greater accuracy than a number of commercially available measures of illness severity; including a fivefold greater accuracy than the All Patient Refined Diagnosis-Related Groups and a threefold greater accuracy than All Payer Severity-Adjusted Diagnosis-Related Groups. CONCLUSION: The MM Index is statistically more accurate than many existing measures of prognosis. The magnitude of improvement is large and may lead to a clinically meaningful difference in patient care. Given the large improvements in accuracy, the use of the MM Index for policy and comparative effectiveness analysis is recommended.
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AIMS: Octogenarians have the highest incidence of heart failure (HF) that is not fully explained by traditional risk factors. We explored whether lack of pneumococcal vaccination is associated with higher risk of incident HF among octogenarians. METHODS AND RESULTS: In the Cardiovascular Health Study (CHS), 5290 community-dwelling adults, ≥65 years of age, were free of baseline HF and had data on pneumococcal vaccination. Of these, 851 were octogenarians, of whom, 593 did not receive pneumococcal vaccination. Multivariable-adjusted hazard ratios (aHR) and 95% confidence intervals (CI) for associations of lack of pneumococcal vaccination with incident HF and other outcomes during 13 years of follow-up were estimated using Cox regression models, adjusting for demographics and other HF risk factors including influenza vaccination. Octogenarians had a mean (±SD) age of 83 (±3) years; 52% were women and 17% African American. Overall, 258 participants developed HF and 662 died. Lack of pneumococcal vaccination was associated with higher relative risk of incident HF (aHR, 1.37; 95% CI, 1.01-1.85; P = 0.044). There was also higher risk for all-cause mortality (aHR, 1.23; 95% CI, 1.02-1.49; P = 0.028), which was mostly driven by cardiovascular mortality (aHR, 1.45; 95% CI, 1.06-1.98; P = 0.019). Octogenarians without pneumococcal vaccination had a trend toward higher risk of hospitalization due to pneumonia (aHR, 1.34; 95% CI, 0.99-1.81; P = 0.059). These associations were not observed among those 65-79 years of age. CONCLUSIONS: Among community-dwelling octogenarians, lack of pneumococcal vaccination was associated with a significantly higher independent risk of incident HF and mortality, and trend for higher pneumonia hospitalization.
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PURPOSE OF THE STUDY: This study provides benchmarks for likelihood, number of days until, and sequence of functional decline and recovery. DESIGN AND METHODS: We analyzed activities of daily living (ADLs) of 296,051 residents in Veteran Affairs nursing homes between January 1, 2000 and October 9, 2012. ADLs were extracted from standard minimum data set assessments. Because of significant overlap between short- and long-stay residents, we did not distinguish between these populations. Twenty-five combinations of ADL deficits described the experience of 84.3% of all residents. A network model described transitions among these 25 combinations. The network was used to calculate the shortest, longest, and maximum likelihood paths using backward induction methodology. Longitudinal data were used to derive a Bayesian network that preserved the sequence of occurrence of 9 ADL deficits. RESULTS: The majority of residents (57%) followed 4 pathways in loss of function. The most likely sequence, in order of occurrence, was bathing, grooming, walking, dressing, toileting, bowel continence, urinary continence, transferring, and feeding. The other three paths occurred with reversals in the order of dressing/toileting and bowel/urinary continence. ADL impairments persisted without any change for an average of 164 days (SD = 62). Residents recovered partially or completely from a single impairment in 57% of cases over an average of 119 days (SD = 41). Recovery rates declined as residents developed more than 4 impairments. IMPLICATIONS: Recovery of deficits among those studied followed a relatively predictable path, and although more than half recovered from a single functional deficit, recovery exceeded 100 days suggesting time to recover often occurs over many months.
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Atividades Cotidianas , Transtornos Cognitivos/fisiopatologia , Cognição/fisiologia , Avaliação Geriátrica/métodos , Casas de Saúde , Recuperação de Função Fisiológica , Caminhada/fisiologia , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Estudos Retrospectivos , Fatores de Risco , Estados UnidosRESUMO
Genetic biomarkers could be useful for orienting treatment of patients with rheumatoid arthritis (RA), but none has been convincingly validated yet. Putative biomarkers include 14 single nucleotide polymorphisms that have shown association with response to TNF inhibitors (TNFi) in candidate gene studies and that we assayed here in 755 RA patients. Three of them, in the PTPRC, IL10 and CHUK genes, were significantly associated with response to TNFi. The most significant result was obtained with rs10919563 in PTPRC, which is a confirmed RA susceptibility locus. Its RA risk allele was associated with improved response (B=0.33, P=0.006). This is the second independent replication of this biomarker (P=9.08 × 10(-8) in the combined 3003 RA patients). In this way, PTPRC has become the most replicated genetic biomarker of response to TNFi. In addition, the positive but weaker replication of IL10 and CHUK should stimulate further validation studies.
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Antirreumáticos/uso terapêutico , Artrite Reumatoide/tratamento farmacológico , Quinase I-kappa B/genética , Interleucina-10/genética , Antígenos Comuns de Leucócito/genética , Fator de Necrose Tumoral alfa/antagonistas & inibidores , Adalimumab/uso terapêutico , Artrite Reumatoide/genética , Feminino , Estudos de Associação Genética , Marcadores Genéticos , Humanos , Infliximab/uso terapêutico , Masculino , Pessoa de Meia-Idade , Polimorfismo de Nucleotídeo Único , RiscoRESUMO
BACKGROUND: Studies found that treatment symptoms of concern to oncology/hematology patients were greatly under-identified in medical records. On average, 11.0 symptoms were reported of concern to patients compared to 1.5 symptoms identified in their medical records. A solution to this problem is use of an electronic symptom checklist that can be easily accessed by patients prior to clinical consultations. PURPOSE: Describe the oncology Therapy-Related Symptom Checklists for Adults (TRSC) and Children (TRSC-C), which are validated bases for e-Health symptom documentation and management. The TRSC has 25 items/symptoms; the TRSC-C has 30 items/symptoms. These items capture up to 80% of the variance of patient symptoms. Measurement properties and applications with outpatients are presented. E-Health applications are indicated. METHODS: The TRSC was developed for adults (N = 282) then modified for children (N = 385). Statistical analyses have been done using correlational, epidemiologic, and qualitative methods. Extensive validation of measurement properties has been reported. RESULTS: Research has found high levels of patient/clinician satisfaction, no increase in clinic costs, and strong correlations of TRSC/TRSC-C with medical outcomes. A recently published sequential cohort trial with adult outpatients at a Mayo Clinic community cancer center found TRSC use produced a 7.2% higher patient quality of life, 116% more symptoms identified/managed, and higher functional status. DISCUSSION, IMPLICATIONS, AND FOLLOW-UP: An electronic system has been built to collect TRSC symptoms, reassure patients, and enhance patient-clinician communications. This report discusses system design and efforts made to provide an electronic system comfortable to patients. Methods used by clinicians to promote comfort and patient engagement were examined and incorporated into system design. These methods included (a) conversational data collection as opposed to survey style or standardized questionnaires, (b) short response phrases indicating understanding of the reported symptom, (c) use of open-ended questions to reduce long lists of symptoms, (d) directed questions that ask for confirmation of expected symptoms, (e) review of symptoms at designated stages, and (d) alerting patients when the computer has informed clinicians about patient-reported symptoms. CONCLUSIONS: An e-Health symptom checklist (TRSC/TRSC-C) can facilitate identification, monitoring, and management of symptoms; enhance patient-clinician communications; and contribute to improved patient outcomes.
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Lista de Checagem/métodos , Neoplasias/terapia , Telemedicina/métodos , Adulto , Criança , Humanos , Informática Médica , Resultado do TratamentoRESUMO
BACKGROUND: Improvement teams make causal inferences, but the methods they use are based on statistical associations. This article shows how data and statistical models can be used to help improvement teams make causal inferences and find the root causes of problems. METHODS: This article uses attribution data, competing risk survival analysis, and Bayesian network probabilities to analyze excessive emergency department (ED) stays within one hospital. We use data recorded by ED clinicians that attributed the cause of excessive ED stays to 23 causes for the 70 049 ED visits between March 2011 and April 2014. We use competing risk survival analysis to identify contribution of each cause to the delay. We use Bayesian network models to analyze interaction among different causes of excessive stays and find the root causes of this problem. RESULTS: This article shows the utility of causal analysis to help improvement teams focus on the root causes of problems. For the example analyzed in the article, most causes for patients' excessive ED stays were related to the hospital operations outside the ED. Therefore, improvement projects inside the ED such as expanding ED, increasing staff at the ED, or improving operations are less likely to have a positive impact on reducing excessive ED stays. On the contrary, interventions that improve hospital occupancy (better discharge, expansion of beds, etc) or improve laboratory response times are more likely to result in positive outcomes.
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Serviço Hospitalar de Emergência/organização & administração , Análise de Causa Fundamental , Tempo para o Tratamento , Teorema de Bayes , Humanos , Tempo de Internação , Melhoria de Qualidade , Análise de SobrevidaRESUMO
BACKGROUND: According to the 2004 Surgeon General's Report on Health Consequences of Smoking, after >15 years of abstinence, the cardiovascular risk of former smokers becomes similar to that of never-smokers. Whether this health benefit of smoking cessation varies by amount and duration of prior smoking remains unclear. METHODS AND RESULTS: Of the 4482 adults ≥65 years without prevalent heart failure (HF) in the Cardiovascular Health Study, 2556 were never-smokers, 629 current smokers, and 1297 former smokers with >15 years of cessation, of whom 312 were heavy smokers (highest quartile; ≥32 pack-years). Age-sex-race-adjusted hazard ratios (aHR) and 95% confidence intervals (CI) for centrally adjudicated incident HF and mortality during 13 years of follow-up were estimated using Cox regression models. Compared with never-smokers, former smokers as a group had similar risk for incident HF (aHR, 0.99; 95% CI, 0.85-1.16) and all-cause mortality (aHR, 1.08; 95% CI, 0.96-1.20), but former heavy smokers had higher risk for both HF (aHR, 1.45; 95% CI, 1.15-1.83) and mortality (aHR, 1.38; 95% CI, 1.17-1.64). However, when compared with current smokers, former heavy smokers had lower risk of death (aHR, 0.64; 95% CI, 0.53-0.77), but not of HF (aHR, 0.97; 95% CI, 0.74-1.28). CONCLUSIONS: After >15 years of smoking cessation, the risk of HF and death for most former smokers becomes similar to that of never-smokers. Although this benefit of smoking cessation is not extended to those with ≥32 pack-years of prior smoking, they have lower risk of death relative to current smokers.
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Insuficiência Cardíaca/mortalidade , Abandono do Hábito de Fumar , Prevenção do Hábito de Fumar , Fumar/mortalidade , Idoso , Idoso de 80 Anos ou mais , Distribuição de Qui-Quadrado , Feminino , Insuficiência Cardíaca/diagnóstico , Insuficiência Cardíaca/etiologia , Humanos , Incidência , Masculino , Análise Multivariada , Prognóstico , Modelos de Riscos Proporcionais , Estudos Prospectivos , Medição de Risco , Fatores de Risco , Fumar/efeitos adversos , Fatores de Tempo , Estados Unidos/epidemiologiaRESUMO
BACKGROUND: Heart failure (HF) is the leading cause for hospital readmission. Hospice care may help palliate HF symptoms but its association with 30-day all-cause readmission remains unknown. METHODS AND RESULTS: Of the 8032 Medicare beneficiaries hospitalized for HF in 106 Alabama hospitals (1998-2001), 182 (2%) received discharge hospice referrals. Of the 7850 patients not receiving hospice referrals, 1608 (20%) died within 6 months post discharge (the hospice-eligible group). Propensity scores for hospice referral were estimated for each of the 1790 (182+1608) patients and were used to match 179 hospice-referral patients with 179 hospice-eligible patients who were balanced on 28 baseline characteristics (mean age, 79 years; 58% women; 18% non-white). Overall, 22% (1742/8032) died in 6 months, of whom 8% (134/1742) received hospice referrals. Among the 358 matched patients, 30-day all-cause readmission occurred in 5% and 41% of hospice-referral and hospice-eligible patients, respectively (hazard ratio associated with hospice referral, 0.12; 95% confidence interval, 0.06-0.24). Hazard ratios (95% confidence intervals) for 30-day all-cause readmission associated with hospice referral among the 126 patients who died and 232 patients who survived 30-day post discharge were 0.03 (0.04-0.21) and 0.17 (0.08-0.36), respectively. Although 30-day mortality was higher in the hospice referral group (43% versus 27%), it was similar at 90 days (64% versus 67% among hospice-eligible patients). CONCLUSIONS: A discharge hospice referral was associated with lower 30-day all-cause readmission among hospitalized patients with HF. However, most patients with HF who died within 6 months of hospital discharge did not receive a discharge hospice referral.
Assuntos
Insuficiência Cardíaca/terapia , Hospitais para Doentes Terminais , Benefícios do Seguro , Medicare , Admissão do Paciente , Alta do Paciente , Readmissão do Paciente , Encaminhamento e Consulta , Idoso , Idoso de 80 Anos ou mais , Alabama/epidemiologia , Distribuição de Qui-Quadrado , Feminino , Insuficiência Cardíaca/diagnóstico , Insuficiência Cardíaca/mortalidade , Humanos , Estimativa de Kaplan-Meier , Tempo de Internação , Masculino , Análise Multivariada , Pontuação de Propensão , Modelos de Riscos Proporcionais , Sistema de Registros , Medição de Risco , Fatores de Risco , Fatores de Tempo , Estados Unidos/epidemiologiaRESUMO
BACKGROUND: Prior risk prediction models have included a selective group of broad comorbidities in scoring prognosis of heart failure (HF) patients. OBJECTIVE: We examined whether scoring a comprehensive set of comorbidities separately, could improve the performance and accuracy of predicting HF prognosis. METHODS: This is a cross-validated, longitudinal, retrospective, observational study. Data were collected on 602,050 unique HF patients, who received care through the Veterans Administration (VA) between October 1, 2006 and September 31, 2011. The dependent variable was mortality in six months. The independent variables were all International Classification of Disease (ICD) comorbidities, without grouping into broad disease categories. RESULTS: The area under the receiver-operating curve (AROC) for the multimorbidity (MM) index was 0.784 (95% confidence interval [CI]: 0.781-0.786). The MM index was significantly (alpha <0.05) more accurate than the Quan variant of the Charlson Index (AROC=0.656), the comorbidity categories within the Care Assessment of Need (CAN) Index (AROC=0.677), the von Walraven variant of the Elixhauser Index (AROC=0.639), chronological age (AROC=0.649), or ejection fraction (EF) (AROC=0.533). CONCLUSION: Inclusion of additional comorbidities improves the accuracy of HF prognostic indices. Future studies are needed to drive HF prognostic indices with the MM index as a component.