The measurement of outcome and the rheumatoid arthritis core set to lift the prejudice of the ‘thaumaturgus cliché’

Bertinotti, Luca; Nacci, Francesca; Matucci‐Cerinic, Marco

doi:10.1093/rheumatology/kel187

Cited by 6 publications

(1 citation statement)

References 11 publications

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“…The decision regarding choice of outcome measures should be based upon a core outcome set achieved through consensus, such as is the case with The Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials (PedIMMPACT, McGrath et al., ) and The Outcome Measures in Rheumatology (OMERACT, Tugwell et al., ). Although core outcomes in pediatrics are generally lacking (Chong et al., ), OMERACT and PedIMMPACT have contributed to improved trial feasibility (in these populations) and relevance and acceptability of trial endpoints on a global scale (Bertinotti, Nacci, & Matucci‐Cerinic, ; Sinha et al., ). This has not yet been addressed for VA outcomes, and in the context of a registry dataset, standardization of outcome measures and time points would be essential to positively impact the useability of registry data by researchers, clinicians, and health care.…”

Section: Discussionmentioning

confidence: 99%

Building a Global, Pediatric Vascular Access Registry: A Scoping Review of Trial Outcomes and Quality Indicators to Inform Evidence‐Based Practice

Schults

Rickard

Kleidon

et al. 2019

Worldviews Ev Based Nurs

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Background: Internationally, there is a lack of comparative vascular access (VA) data for pediatric clinicians and organizations to benchmark outcomes, evaluate quality initiatives, and improve practice. A VA registry is needed to address these knowledge and data capture gaps.Objectives: To determine the range and heterogeneity of VA outcome measures or quality indicators reported in randomized controlled trials (RCTs) and clinical registries, to inform development of a homogeneous, reliable, minimum dataset for a pediatric VA registry.Methods: Scoping review framework. A systematic search for RCTs reporting VA outcomes in pediatrics and neonates was undertaken in the Cochrane library, EMBASE, CINAHL, PubMed, MEDLINE, and EBSCO using a medical subject headings and key words related to VA and pediatrics. We included RCTs of children (0-18 years) reporting any VA outcome. We identified clinical registries reporting VA data in children (0-18) through web-based searches using key words related to VA and clinical or quality registries. Additional registries were identified through peer consultation. The frequency and scope of outcome measures and quality indicators were extracted from trials and registries and evaluated.Results: From 93 RCTs included, 214 different VA measures were reported, reflecting 14 outcome domains. The most commonly reported outcome domains were insertion (44 RCTs; 47%), noninfectious complications (33 RCTs; 35%), and infectious complications (30 RCTs; 32%). Of the 22 registries identified, VA-associated infection was the main quality indicator routinely collected (12 registries; 55%). Outcomes such as mechanical complications and patientreported outcomes were infrequently collected.Linking Evidence to Action: Vascular access outcomes reported in pediatric and neonatal RCTs are highly heterogeneous. Internationally, clinical registries currently collect minimal VA data with the exception of infection outcomes. A core dataset of reliable, relevant measures to children and clinicians for VA device quality is needed. This will enable a VA registry that facilitates inter-institutional and international benchmarking.

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Section: Discussionmentioning

confidence: 99%

Building a Global, Pediatric Vascular Access Registry: A Scoping Review of Trial Outcomes and Quality Indicators to Inform Evidence‐Based Practice

Schults

Rickard

Kleidon

et al. 2019

Worldviews Ev Based Nurs

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Patients’ perceptions of health-related quality of life in rheumatoid arthritis

Núñez¹,

Núñez²,

Sánchez

et al. 2009

Clin Rheumatol

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The purpose of this study is to determine how health-related quality of life (HRQL) is perceived by patients with rheumatoid arthritis using textual analysis and to identify associations between sociodemographic and clinical variables and patients' perceptions. Multicentre, cross-sectional study, including 781 patients (78.8% females, mean age 60.65 years, standard deviation 14.22). Sociodemographic and clinical variables were collected. A questionnaire was used which included an open question, "What does HRQL mean to you?" Cluster analysis was used, and answers to the open question were analysed using textual analysis. Cluster analysis showed three typologies differentiated by gender, age, and socioeconomic level and by the terms used to describe perceptions of HRQL with no marked clinical differences. Characteristic phrases were "to be totally independent, to have no pain, and to do things without thinking about the negative effects" (typology 1); "to have no pain and control my moods and my illness has made me a little excitable" (typology 2); and "to feel well enough to do things for myself" (typology 3). Three representative typologies of patients were identified who differed clearly in their perceptions of HRQL. Textual analysis may be considered as a valid tool for the analysis of complex issues such as quality of life.

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The rehabilitation model rules in RA until biomedicine transforms tomorrow's rheumatologist into a real thaumaturgus

Jones

2007

Rheumatology

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The measurement of outcome and the rheumatoid arthritis core set to lift the prejudice of the ‘thaumaturgus cliché’

Cited by 6 publications

References 11 publications

Building a Global, Pediatric Vascular Access Registry: A Scoping Review of Trial Outcomes and Quality Indicators to Inform Evidence‐Based Practice

Building a Global, Pediatric Vascular Access Registry: A Scoping Review of Trial Outcomes and Quality Indicators to Inform Evidence‐Based Practice

Patients’ perceptions of health-related quality of life in rheumatoid arthritis

The rehabilitation model rules in RA until biomedicine transforms tomorrow's rheumatologist into a real thaumaturgus

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