Systematic review of systemic sclerosis-specific instruments for the EULAR Outcome Measures Library: An evolutional database model of validated patient-reported outcomes

2017 ◽  
Vol 46 (5) ◽  
pp. 609-614 ◽  
Author(s):  
Francesca Ingegnoli ◽  
Loreto Carmona ◽  
Isabel Castrejon
2021 ◽  
Author(s):  
Yuki Seidler ◽  
Erika Mosor ◽  
Margaret R Andrews ◽  
Carolina Watson ◽  
Nick Bott ◽  
...  

Background: Patient-reported outcomes (PROs) are an essential part of health outcome measurement and vital to patient-centricity and valued-based care. Several international consortia have developed core outcome sets and many of them include PROs. PROs are measured by patient-reported outcome measures (PROMs). PROs and PROMs can be generic or specific to certain diseases or conditions. While the characteristics of generic PROs and PROMs are well recognised as widely relevant and applicable across different domains, diseases and conditions, there is a lack of knowledge on the types of PROs measured by generic PROMs. We also do not know in which disease areas generic PROs and PROMs are commonly used. To date, there has been no systematic review solely focusing on generic PROMs, what they measure and their areas of application. Objectives: This systematic review will identify core PROs measured by generic PROMs used in adult populations and the areas in which they are applied. Methods: We will conduct a systematic review of reviews. The screening process and the reporting will comply with the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) 2020 Statement. We will use four databases, Medline [PubMed], CINHAL [Ebsco], Cochrane [Cochrane Library], and PsycINFO [Ovid], and reports from international consortia. Inclusion criteria are systematic reviews, meta-analysis or patient-reported outcome sets developed by international consortia reporting on generic PROMs in adult populations. Articles primarily focusing on patient-reported experience measures (PREMs), children or adolescents, or those not written in English will be excluded. Risk of bias will be assessed by checking if the included articles comply with established guidelines for systematic reviews such as the PRISMA statement. We will extract generic PROMs and PROs measured by these PROMs, and the areas applied from the selected articles and reports. Extracted data and information will be quantitatively and qualitatively synthesised without statistical interference. The quality of the synthesised evidences will be assessed by clarifying the strengths, limitations and possible biases in our review.


Author(s):  
Alain M. Schoepfer ◽  
Camilla Schürmann ◽  
Sven Trelle ◽  
Marcel Zwahlen ◽  
Christopher Ma ◽  
...  

<b><i>Background:</i></b> Over the last 20 years, diverse outcome measures have been used to evaluate the effectiveness of therapies for eosinophilic esophagitis (EoE). This systematic review aims to identify the readouts used in observational studies of topical corticosteroids, diet, and dilation in adult EoE patients. <b><i>Methods:</i></b> We searched MEDLINE and Embase for prospective and retrospective studies (cohorts/case series, randomized open-label, and case-control) evaluating the use of diets, dilation, and topical corticosteroids in adults with EoE. Two authors independently assessed the articles and extracted information about histologic, endoscopic, and patient-reported outcomes and tools used to assess treatment effects. <b><i>Results:</i></b> We included 69 studies that met inclusion criteria. EoE-associated endoscopic findings (assessed either as absence/presence or using Endoscopic Reference Score) were evaluated in 24/35, 11/17, and 9/17 studies of topical corticosteroids, diet, and dilation, respectively. Esophageal eosinophil density was recorded in 32/35, 17/17, and 11/17 studies of topical corticosteroids, diet, and dilation, respectively. Patient-reported outcomes were not uniformly used (only in 14, 8, and 3 studies of topical corticosteroids, diet, and dilation, respectively), and most tools were not validated for use in adults with EoE. <b><i>Conclusions:</i></b> Despite the lack of an agreed set of core outcomes that should be recorded and reported in studies in adult EoE patients, endoscopic EoE-associated findings and esophageal eosinophil density are commonly used to assess disease activity in observational studies. Standardization of outcomes and data supporting the use of outcomes are needed to facilitate interpretation of evidence, its synthesis, and comparisons of interventions in meta-analyses of therapeutic trials in adults with EoE.


2020 ◽  
pp. 175857322093586
Author(s):  
Fady Y Hijji ◽  
Thomas G Cheslik ◽  
Andrew D Schneider ◽  
Blake M Schach ◽  
Indresh Venkatarayappa

Introduction Patient-reported outcomes (PROs) are frequently utilized within orthopaedics to determine the extent of patient disease and the efficacy of surgical treatments. Shoulder arthroplasty is a common treatment option for a range of pathologies; however, substantial variety exists regarding the instruments used within the published literature, limiting their quality and generalizability. The purpose of the present systematic review is to evaluate the overall number and frequency of outcome measures used in all clinical studies evaluating outcomes following shoulder arthroplasty. Methods This systematic review was performed following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Relevant studies that assessed patient reported outcomes following total shoulder arthroplasty, reverse shoulder arthroplasty, and shoulder hemiarthroplasty were obtained from PubMed, MEDLINE, and EMBASE databases. For each manuscript, the journal, authors, region of origin, level of evidence, and subject/pathology were recorded. The frequency of each reported outcome measure and category. Associations between study characteristics and measure categories were tested using Poisson regression with robust error variance. Results A total of 682 articles were included in the analysis, reporting 42 different PROs. The most popular tools were the Constant-Murley score (49.7%), the American Shoulder and Elbow Surgeons Evaluation Form (37.7%), and the Visual Analog Scale (34.3%). A generic outcome tool was used in 287 studies (42.1%), while 645 (94.6%) utilized a shoulder-specific measure and 49 (7.2%) used a disease-specific measure. The use of generic (p<0.001) and disease specific (p<0.001) measures were associated with higher level of evidence. Conclusion Studies assessing patient outcomes following shoulder arthroplasty employ a large range of PRO measuring tools, many of which are non-validated. Furthermore, only a small percentage of studies utilize a combination of tools from different categories despite current recommendations. Consensus on validated and clinically-meaningful tools from multiple categories is necessary to increase the generalizability and applicability of published studies in shoulder arthroplasty literature. Level of Evidence 1


Author(s):  
Stergios K. Doumouchtsis ◽  
Jemina Loganathan ◽  
John Fahmy ◽  
Gabriele Falconi ◽  
Maria Rada ◽  
...  

Author(s):  
Muath Alturkistani ◽  
Ali Alahmari ◽  
Hussam Alhumaidi ◽  
Mohammed Alharbi ◽  
Alhanouf Alqernas ◽  
...  

2019 ◽  
Vol 30 (3) ◽  
pp. 405-413 ◽  
Author(s):  
Brittany E. Haws ◽  
Benjamin Khechen ◽  
Mundeep S. Bawa ◽  
Dil V. Patel ◽  
Harmeet S. Bawa ◽  
...  

OBJECTIVEThe Patient-Reported Outcomes Measurement Information System (PROMIS) was developed to provide a standardized measure of clinical outcomes that is valid and reliable across a variety of patient populations. PROMIS has exhibited strong correlations with many legacy patient-reported outcome (PRO) measures. However, it is unclear to what extent PROMIS has been used within the spine literature. In this context, the purpose of this systematic review was to provide a comprehensive overview of the PROMIS literature for spine-specific populations that can be used to inform clinicians and guide future work. Specifically, the authors aimed to 1) evaluate publication trends of PROMIS in the spine literature, 2) assess how studies have used PROMIS, and 3) determine the correlations of PROMIS domains with legacy PROs as reported for spine populations.METHODSStudies reporting PROMIS scores among spine populations were identified from PubMed/MEDLINE and a review of reference lists from obtained studies. Articles were excluded if they did not report original results, or if the study population was not evaluated or treated for spine-related complaints. Characteristics of each study and journal in which it was published were recorded. Correlation of PROMIS to legacy PROs was reported with 0.1 ≤ |r| < 0.3, 0.3 ≤ |r| < 0.5, and |r| ≥ 0.5 indicating weak, moderate, and strong correlations, respectively.RESULTSTwenty-one articles were included in this analysis. Twelve studies assessed the validity of PROMIS whereas 9 used PROMIS as an outcome measure. The first study discussing PROMIS in patients with spine disorders was published in 2012, whereas the majority were published in 2017. The most common PROMIS domain used was Pain Interference. Assessments of PROMIS validity were most frequently performed with the Neck Disability Index. PROMIS domains demonstrated moderate to strong correlations with the legacy PROs that were evaluated. Studies assessing the validity of PROMIS exhibited substantial variability in PROMIS domains and legacy PROs used for comparisons.CONCLUSIONSThere has been a recent increase in the use of PROMIS within the spine literature. However, only a minority of studies have incorporated PROMIS for its intended use as an outcomes measure. Overall, PROMIS has exhibited moderate to strong correlations with a majority of legacy PROs used in the spine literature. These results suggest that PROMIS can be effective in the assessment and tracking of PROs among spine populations.


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