Extending the RIGHT statement for reporting adapted practice guidelines in healthcare: the RIGHT-Ad@pt Checklist protocol

Evidence-based medicine; Guideline adaptation; Guidelines as topicMedicina basada en la evidencia; Adaptación de guías clínicas; Guías clínicasMedicina basada en l'evidència; Adaptació de guies clíniques; Guies clíniquesIntroduction: The adaptation of guidelines is an increasingly used methodology for the efficient development of contextualised recommendations. Nevertheless, there is no specific reporting guidance. The essential Reporting Items of Practice Guidelines in Healthcare (RIGHT) statement could be useful for reporting adapted guidelines, but it does not address all the important aspects of the adaptation process. The objective of our project is to develop an extension of the RIGHT statement for the reporting of adapted guidelines (RIGHTAd@pt Checklist). Methods and analysis: To develop the RIGHT-Ad@pt Checklist, we will use a multistep process that includes: (1) establishment of a Working Group; (2) generation of an initial checklist based on the RIGHT statement; (3) optimisation of the checklist (an initial assessment of adapted guidelines, semistructured interviews, a Delphi consensus survey, an external review by guideline developers and users and a final assessment of adapted guidelines); and (4) approval of the final checklist. At each step of the process, we will calculate absolute frequencies and proportions, use content analysis to summarise and draw conclusions, discuss the results, draft a report and refine the checklist. Ethics and dissemination: We have obtained a waiver of approval from the Clinical Research Ethics Committee at the Hospital de la Santa Creu i Sant Pau (Barcelona, Spain). We will disseminate the RIGHT-Ad@pt Checklist by publishing into a peer-reviewed journal, presenting to relevant stakeholders and translating into different languages. We will continuously seek feedback from stakeholders, surveil new relevant evidence and, if necessary, update the checklist.YS is funded by China Scholarship Council (No 201707040103). LMG is funded by a Miguel Servet contract from the Instituto de Salud Carlos III (CP18/00007)

Cross-cultural adaptation and validation of Behçet's disease quality of life questionnaire

<p>Abstract</p> <p>Background</p> <p>Currently, there is one Behçet's disease (BD) specific self reporting questionnaire developed and published in the literature, The Leeds BD-quality of life (QoL). We conducted a cross-cultural adaptation and validation of the Arabic version of the Leeds BD-QoL</p> <p>Methods</p> <p>A cross-sectional study was conducted among 41 consecutive patients attending rheumatology clinics at the American University of Beirut Medical Center between June and December 2007. The BD-QoL questionnaire, the Katz Index of Activities of Daily Living (ADL) and the Lawton Instrumental Activities of Daily Living (IADL) questionnaires were co-administered during the same visit, and severity scores were calculated. Cross-cultural adaptation of BD-QoL was performed using forward and backward translations of the original questionnaire. Internal consistency and test-retest reliability of the final version were determined. Exploratory Factor Analysis (EFA) was used to assess the dimensionality of the scale items. External construct validity was examined by correlating Arabic BD-QoL with the severity score, ADL and IADL.</p> <p>Results</p> <p>The 30 items of the adapted Arabic BD-QoL showed a high internal consistency (KR-20 coefficient 0.89) and test-retest reliability (Spearman's test 0.91). The convergence of all 30 items suggests that the 30-item adapted Arabic BD-QoL scale is unidimensional. BD-QoL did not correlate with any of the patients' demographics. Still, it was positively correlated with patient severity score (r 0.4, p 0.02), and IADL (but not ADL).</p> <p>Conclusions</p> <p>This cross-cultural adaptation has produced an Arabic BD-QoL questionnaire that is now available for use in clinical settings and in research studies, among Arabic speaking patients.</p

Factors to Consider During Identification and Invitation of Individuals in a Multi-stakeholder Research Partnership

BACKGROUND: Health research teams increasingly partner with stakeholders to produce research that is relevant, accessible, and widely used. Previous work has covered stakeholder group identification. OBJECTIVE: We aimed to develop factors for health research teams to consider during identification and invitation of individual representatives in a multi-stakeholder research partnership, with the aim of forming equitable and informed teams. DESIGN: Consensus development. PARTICIPANTS: We involved 16 stakeholders from the international Multi-Stakeholder Engagement (MuSE) Consortium, including patients and the public, providers, payers of health services/purchasers, policy makers, programme managers, peer review editors, and principal investigators. APPROACH: We engaged stakeholders in factor development and as co-authors of this manuscript. Using a modified Delphi approach, we gathered stakeholder views concerning a preliminary list of 18 factors. Over two feedback rounds, using qualitative and quantitative analysis, we concentrated these into ten factors. KEY RESULTS: We present seven highly desirable factors: ‘expertise or experience’, ‘ability and willingness to represent the stakeholder group’, ‘inclusivity (equity, diversity and intersectionality)’, ‘communication skills’, ‘commitment and time capacity’, ‘financial and non-financial relationships and activities, and conflict of interest’, ‘training support and funding needs’. Additionally, three factors are desirable: ‘influence’, ‘research relevant values’, ‘previous stakeholder engagement’. CONCLUSIONS: We present factors for research teams to consider during identification and invitation of individual representatives in a multi-stakeholder research partnership. Policy makers and guideline developers may benefit from considering the factors in stakeholder identification and invitation. Research funders may consider stipulating consideration of the factors in funding applications. We outline how these factors can be implemented and exemplify how their use has the potential to improve the quality and relevancy of health research. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s11606-022-07411-w

Integration of Sequence Data from a Consanguineous Family with Genetic Data from an Outbred Population Identifies PLB1 as a Candidate Rheumatoid Arthritis Risk Gene

Integrating genetic data from families with highly penetrant forms of disease together with genetic data from outbred populations represents a promising strategy to uncover the complete frequency spectrum of risk alleles for complex traits such as rheumatoid arthritis (RA). Here, we demonstrate that rare, low-frequency and common alleles at one gene locus, phospholipase B1 (PLB1), might contribute to risk of RA in a 4-generation consanguineous pedigree (Middle Eastern ancestry) and also in unrelated individuals from the general population (European ancestry). Through identity-by-descent (IBD) mapping and whole-exome sequencing, we identified a non-synonymous c.2263G>C (p.G755R) mutation at the PLB1 gene on 2q23, which significantly co-segregated with RA in family members with a dominant mode of inheritance (P = 0.009). We further evaluated PLB1 variants and risk of RA using a GWAS meta-analysis of 8,875 RA cases and 29,367 controls of European ancestry. We identified significant contributions of two independent non-coding variants near PLB1 with risk of RA (rs116018341 [MAF = 0.042] and rs116541814 [MAF = 0.021], combined P = 3.2×10−6). Finally, we performed deep exon sequencing of PLB1 in 1,088 RA cases and 1,088 controls (European ancestry), and identified suggestive dispersion of rare protein-coding variant frequencies between cases and controls (P = 0.049 for C-alpha test and P = 0.055 for SKAT). Together, these data suggest that PLB1 is a candidate risk gene for RA. Future studies to characterize the full spectrum of genetic risk in the PLB1 genetic locus are warranted

Integration of sequence data from a consanguineous family with genetic data from an outbred population identifies PLB1 as a candidate rheumatoid arthritis risk gene

Integrating genetic data from families with highly penetrant forms of disease together with genetic data from outbred populations represents a promising strategy to uncover the complete frequency spectrum of risk alleles for complex traits such as rheumatoid arthritis (RA). Here, we demonstrate that rare, low-frequency and common alleles at one gene locus, phospholipase B1 (PLB1), might contribute to risk of RA in a 4-generation consanguineous pedigree (Middle Eastern ancestry) and also in unrelated individuals from the general population (European ancestry). Through identity-by-descent (IBD) mapping and whole-exome sequencing, we identified a non-synonymous c.2263G>C (p.G755R) mutation at the PLB1 gene on 2q23, which significantly co-segregated with RA in family members with a dominant mode of inheritance (P = 0.009). We further evaluated PLB1 variants and risk of RA using a GWAS meta-analysis of 8,875 RA cases and 29,367 controls of European ancestry. We identified significant contributions of two independent non-coding variants near PLB1 with risk of RA (rs116018341 [MAF = 0.042] and rs116541814 [MAF = 0.021], combined P = 3.2×10-6). Finally, we performed deep exon sequencing of PLB1 in 1,088 RA cases and 1,088 controls (European ancestry), and identified suggestive dispersion of rare protein-coding variant frequencies between cases and controls (P = 0.049 for C-alpha test and P = 0.055 for SKAT). Together, these data suggest that PLB1 is a candidate risk gene for RA. Future studies to characterize the full spectrum of genetic risk in the PLB1 genetic locus are warranted. © 2014 Plenge et al

Remediation of learners struggling with communication skills: a systematic review

Background Communication skills is a core area of competency for healthcare practitioners. However, trainees deficient in those skills are not identified early enough to address the deficiency. Furthermore, faculty often struggle to identify effective remediation strategies for those who fail to meet expectations. We undertook a systematic review to determine which assessment methods are appropriate to identify learners that struggle with communication skills and the strategies used to remediate them. Methods The literature was searched from January 1998 through to May 2019 using academic databases and grey literature. Trainees were defined as healthcare practitioners in undergraduate, graduate and continuing education. Characteristics of studies, assessment and intervention strategies and outcomes were synthesized qualitatively and summarized in tables. Results From an initial 1636 records, 16 (1%) studies met the review criteria. Majority of the learners were medical students. A few studies (44%) included students from other disciplines, residents and physicians in practice. The remediation programs, in the studies, ranged from 1 week to 1 year. Around half of the studies focused solely on learners struggling with communication skills. The majority of studies used a format of a clinical OSCE to identify struggling learners. None of the studies had a single intervention strategy with the majority including an experiential component with feedback. Conclusions A few studies collectively described the diagnosis, remediation intervention and the assessment of the outcomes of remediation of communication skills. For a remediation strategy to be successful it is important to ensure: (i) early identification and diagnosis, (ii) the development of an individualized plan and (iii) providing reassessment with feedback to the learner.Other Information Published in: BMC Medical Education License: https://creativecommons.org/licenses/by/4.0See article on publisher's website: http://dx.doi.org/10.1186/s12909-020-02074-9</p

MOESM1 of Bibliometric analysis of rheumatology research in the Arab countries

Additional file 1: Table S1A. Estimated disability adjusted life years (DALY) for non-communicable disease (2012) for all ages. Table S1B. Estimated disability adjusted life years (DALY) for non-communicable disease 560 (2012) for ages 30–59. Table S2. Raw data based on all paper type categories listed in Medline. Annex S1.All searches in the Web of Science Core Collection were restricted by Document Type=(Article) and Timespan=(1975–2014)