141 research outputs found
A systematic review of systemic sclerosis instruments for the eular outcome measures library : An evolutionary database of validated patient-reported instruments
Background: Over time, a patient-centered evaluation of health status has become more important for systemic sclerosis (SSc), both in research and clinical setting. Patient-reported outcomes (PROs) are being increasingly used to measure various domains of disease status relevant to patients and physicians. The EULAR Outcome Measures Library (OML) is a freely available website with structured access to a growing database of validated PROs [1], but currently there are no PROs available on SSc at the EULAR OML.
Objectives: To provide a comprehensive review of validated SSc-specific PROs and to critically appraise their validity.
Methods: A sensitive search was developed in Medline and Embase (08/2015) to identify all validation studies, cohort studies, reviews or metaanalyses in which the objective were the development or validation of PROs evaluating organ involvement, disease activity or damage in SSc. A reviewer screened title and abstracts, selected the studies, and collected data concerning validation using ad hoc forms based on the COSMIN checklist.
Results: From 13,140 articles captured, 74 met the predefined criteria. After excluding an instrument for the unavailability of an English version, the selected studies provided information on 6 SSc-specific PROs: the Scleroderma Assessment Questionnaire (SAQ), the scleroderma functional score (FS), the Raynaud's condition score (RCS), the Mouth Handicap in SSc (MHISS), the University of California Los Angeles-Scleroderma Clinical Trial Consortium Gastro-Intestinal tract (UCLA-SCTC-GIT 2.0), and the Skin Self-Assessment. The table summarizes the instruments and their measurement properties:
Table 1
SSc-specific PROs Domains No. of items and range Measurement properties
Reliability IC/TR/ME Validity Responsiveness Interpretability
SAQ Functional status (vascular, respiratory, GIT and musculoskeletal apparatus) Items: 23Range: 0\u20133 ICC 0.79\u20130.95 Total score higher in pts with systemic involvement Vascular z=0.92\u20132.97; Respiratory z=1.34\u20132.52; GIT z= 123.14\u20134.03; Musculoskeletal status z=0.68\u20133.16 \u2013
FS Functional ability (upper limbs & muscle weakness) Items: 11Range: 0\u201333 Intra-observkw 0.19\u20130.6inter-observkw0.69\u20130.94 HAQ-DI r=0.90Skin score r=0.11 FS correlates with HAQ-DI 0.59, & Hand HAQ-DI 0.58 \u2013
RCS Severity and impact of Raynaud's phenomenon Item: 1Range 0\u201310 ICC 0.70 Disease activity, Rp measures, digital ulcers, mood/tension 67% variance ES 0.6SRM 0.64 MID 14\u201315 points (0\u2013100 VAS)PASS 34 points
MHISS Disability involving the mouth Items: 12Range: 0\u201348 ICC 0.96 HAQ r=0.33, CHFS r=0.37, mouth opening r= 120.34, MACTAR r=0.11, HADd r=0.26, HADa r=0.17 \u2013 \u2013
UCLA SCTC GIT 2.0 GIT symptoms severity Items: 34Range: 0\u20133 Cronbach's \u3b1>0.70, constipation (\u3b1=0.67)ICC 0.71 Total GIT score r=0.60; Upper GIT r=0.52; Lower GIT r=0.60 rho 0.05\u20130.48 MID/improvement: 0.07\u20130.36;MID/worsening: 0.06 120.21;Floor: noneCeiling: 4%
Skin self-assessment Skin thickening Items: 17Range: 0\u201351 ICC 0.5\u20130.61 Skin score r=0.435 No changes 1 yr follow-up \u2013 dcSScFloor 15%Ceiling n.a.
Conclusions: Six SSc-specific PROs have a minimum validation and will be included in the EULAR OML. In general, the level of validation attained could be improved. Further development in the area of disease-specific PROs in SSc is warranted.
References:
Castrej\uf3n I, Gossec L, Carmona L. Ann Rheum Dis. 2015;74(2):475\u2013
Neurotrophic Support from Peripheral Nerve Tissue for Human Adrenal Chromaffin Cells (Co-Grafting) in the Treatment of Parkinson's Disease
Caracterización morfofisiológica y molecular de hongos entomopatógenos asociados a Hypothenemus hampei en áreas cafetaleras de la comarca Ngäbe-Buglè.
La broca del café, Hypothenemus hampei (Ferrari)(Coleoptera: Curculionidae: Scolytinae) es la principal plaga del cultivo del café (Coffea spp.) y colonizó recientemente este cultivo en la comarca Ngäbe-Buglè.
Una de las alternativas de manejo de esta plaga es a través de sus enemigos naturales, por lo que el objetivo de este estudio fue caracterizar morfofisiológica y molecularmente aislados de hongos entomopatógenos nativos, colectados en la comarca Ngäbe-Buglè y seleccionar los más promisorios, para su inclusión en programas de manejo agroecológico de plagas.
La identificación molecular se hizo mediante la secuenciación de la región del espaciador transcrito interno (ITS, del inglés Internal Transcribed Spacer) (ITS 1 y 2 incluyendo 5.8 S).
Se identificaron 13 aislados pertenecientes a Beauveria bassiana (Vullevein), y un aislado de Purpureocillium lilacinum (Thom) Luangsa-ard, Hou- braken, Hywel-Jones & Samson.
Adicionalmente, se incluyó un aislado (RS-Ij006) de Isaria javanica (= Cordyceps javanica (Frieder. & Bally) Samson & Hywel-Jones) de la colección de hongos entomopatógenos del Laboratorio de Entomología del IDIAP, David, para la determinación de las características morfológicas.
Para la determinación de las características morfológicas se utilizaron tres medios de cultivo: Papa-Dextrosa-Agar, Malta-Dextrosa Agar y Sabouraud-Dextrosa-Agar.
Se evaluó la mortalidad y se obtuvo el tiempo letal medio (TL50)).
Los mayores porcentajes de mortalidad de H. hampei, al día 15 después de la inoculación, se observaron con los aislamientos RS-Ij006 y D-Bb1400 con 100 %; seguidos por D-Bb1398 con 98.90 % y D-Bb1350 con 93.3 %.
Los menores registros del TL50 se obtuvieron con los aislados de D-1388 (Purpureocillium lilacinum) con 3.52 días y RS-Ij006 con3.98 días, seguidos por D-Bb1350 con 6.58 días.
Los aislados a los que el insecto presentó menor susceptibilidad fueron D-1391,D-1399, D-Bb1397, D-Bb1412 y D-Bb1395, D-Bb1392, estos necesitaron más tiempo para alcanzar el 100 % de mortalidad de adultos de H. hampei y el TL50 fue superior a 11 días
Evaluating patient reported outcomes in routine practice of patients with rheumatoid arthritis treated with biological disease modifying anti rheumatic drugs (b-DMARDs)
Role of targeted therapies in rheumatic patients on COVID-19 outcomes: Results from the COVIDSER study
Objectives To analyse the effect of targeted therapies, either biological (b) disease-modifying antirheumatic drugs (DMARDs), targeted synthetic (ts) DMARDs and other factors (demographics, comorbidities or COVID-19 symptoms) on the risk of COVID-19 related hospitalisation in patients with inflammatory rheumatic diseases. Methods The COVIDSER study is an observational cohort including 7782 patients with inflammatory rheumatic diseases. Multivariable logistic regression was used to estimate ORs and 95% CIs of hospitalisation. Antirheumatic medication taken immediately prior to infection, demographic characteristics, rheumatic disease diagnosis, comorbidities and COVID-19 symptoms were analysed. Results A total of 426 cases of symptomatic COVID-19 from 1 March 2020 to 13 April 2021 were included in the analyses: 106 (24.9%) were hospitalised and 19 (4.4%) died. In multivariate-adjusted models, bDMARDs and tsDMARDs in combination were not associated with hospitalisation compared with conventional synthetic DMARDs (OR 0.55, 95% CI 0.24 to 1.25 of b/tsDMARDs, p=0.15). Tumour necrosis factor inhibitors (TNF-i) were associated with a reduced likelihood of hospitalisation (OR 0.32, 95% CI 0.12 to 0.82, p=0.018), whereas rituximab showed a tendency to an increased risk of hospitalisation (OR 4.85, 95% CI 0.86 to 27.2). Glucocorticoid use was not associated with hospitalisation (OR 1.69, 95% CI 0.81 to 3.55). A mix of sociodemographic factors, comorbidities and COVID-19 symptoms contribute to patients'' hospitalisation. Conclusions The use of targeted therapies as a group is not associated with COVID-19 severity, except for rituximab, which shows a trend towards an increased risk of hospitalisation, while TNF-i was associated with decreased odds of hospitalisation in patients with rheumatic disease. Other factors like age, male gender, comorbidities and COVID-19 symptoms do play a role.
Decoding the molecular heterogeneity of pediatric monomorphic post-solid organ transplant lymphoproliferative disorders
Analysis of employment rate and social status in young adults with childhood-onset rheumatic disease in Catalonia
Multinational evidence-based recommendations on how to investigate and follow-up undifferentiated peripheral inflammatory arthritis: integrating systematic literature research and expert opinion of a broad international panel of rheumatologists in the 3E Initiative
Methods: 697 rheumatologists from 17 countries participated in the 3E (Evidence, Expertise, Exchange) Initiative of 2008–9 consisting of three separate rounds of discussions and modified Delphi votes. In the first round 10 clinical questions were selected. A bibliographic team systematically searched Medline, Embase, the Cochrane Library and ACR/EULAR 2007–2008 meeting abstracts. Relevant articles were reviewed for quality assessment, data extraction and synthesis. In the second round each country elaborated a set of national recommendations. Finally, multinational recommendations were formulated and agreement among the participants and the potential impact on their clinical practice was assessed. Results: A total of 39 756 references were identified, of which 250 were systematically reviewed. Ten multinational key recommendations about the investigation and follow-up of UPIA were formulated. One recommendation addressed differential diagnosis and investigations prior to establishing the operational diagnosis of UPIA, seven recommendations related to the diagnostic and prognostic value of clinical and laboratory assessments in established UPIA (history and physical examination, acute phase reactants, autoantibodies, radiographs, MRI and ultrasound, genetic markers and synovial biopsy), one recommendation highlighted predictors of persistence (chronicity) and the final recommendation addressed monitoring of clinical disease activity in UPIA. Conclusions: Ten recommendations on how to investigate and follow-up UPIA in the clinical setting were developed. They are evidence-based and supported by a large panel of rheumatologists, thus enhancing their validity and practical use
Differences and similarities between the EULAR/ASAS-EULAR and national recommendations for treatment of patients with psoriatic arthritis and axial spondyloarthritis across Europe
This is the first report comparing EULAR and national treatment recommendations for PsA patients across Europe, and the first this decade to compare ASAS-EULAR and national treatment recommendations in axSpA patients. An electronic survey was completed from October 2021–April 2022 by rheumatologists in 15 European countries. One and four countries followed all EULAR and ASAS-EULAR recommendations, respectively. Five countries had no national treatment recommendations for PsA and/or axSpA, but followed other regulations. In several countries, national treatment recommendations predated the most recent EULAR/ASAS-EULAR recommendations. Entry criteria for starting biologic/targeted synthetic disease-modifying anti-rheumatic drugs varied considerably. In several countries, for PsA patients with significant skin involvement, interleukin-17 inhibitors were not given preference. The positioning of Janus Kinase inhibitors differed and Phosphodiesterase-4 inhibitors were not in use/reimbursed in most countries. This study may motivate European countries to update their national treatment recommendations, to align them better with the latest international recommendations
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