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When Patients Write the Guidelines: Patient Panel Recommendations for the Treatment of Rheumatoid Arthritis.

ABSTRACT: How best to involve patients in the development of clinical practice guideline (CPG) recommendations is not known. We sought to determine the feasibility and value of developing CPG recommendations based on a voting panel composed entirely of patients, with the ultimate goal of comparing the patients' recommendations to ones developed by a physician-dominated voting panel on the same clinical questions.Ten patients with rheumatoid arthritis completed 8 hours of training on evidence-based medicine and guideline development. They constituted a voting panel and, with 2 American College of Rheumatology staff with expertise in CPG development and a physician facilitator, subsequently met at a face-to-face meeting to develop recommendations. They applied the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) methodology to formulate recommendations on 18 questions for which there was evidence warranting moderate or high confidence.The patient panel developed recommendations for 16 of the 18 questions; for the other 2, the panel thought there were insufficient data to support a recommendation. For 13 of the 16 questions, the patient panel recommended the same course of action as did the physician-dominated panel. Differences were due to how the 2 panels valued the balance between benefits and harms.Patient and physician-dominated panels developed the same recommendations for most questions for which there was evidence warranting moderate to high confidence. Additional experiences are necessary to advance the evidence necessary to determine what panel composition is optimal to produce the best guidelines.

SUBMITTER: Fraenkel L

PROVIDER: S-EPMC4715535 | biostudies-literature | 2016 Jan

REPOSITORIES: biostudies-literature

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When Patients Write the Guidelines: Patient Panel Recommendations for the Treatment of Rheumatoid Arthritis.

Fraenkel Liana L Miller Amy S AS Clayton Kelly K Crow-Hercher Rachelle R Hazel Shantana S Johnson Britt B Rott Leslie L White Whitney W Wiedmeyer Carole C Montori Victor M VM Singh Jasvinder A JA Nowell W Benjamin WB

Arthritis care & research 20151106 1

<h4>Objective</h4>How best to involve patients in the development of clinical practice guideline (CPG) recommendations is not known. We sought to determine the feasibility and value of developing CPG recommendations based on a voting panel composed entirely of patients, with the ultimate goal of comparing the patients' recommendations to ones developed by a physician-dominated voting panel on the same clinical questions.<h4>Methods</h4>Ten patients with rheumatoid arthritis completed 8 hours of ...[more]

PMID: 26545701

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Project description:BackgroundThe 2021 American College of Rheumatology (ACR) rheumatoid arthritis (RA) guideline considers the specific context of the United States which differs from that of Saudi Arabia in many aspects that may impact recommendations. The objective of this project was to adapt a set of prioritized recommendations from the 2021 ACR guideline for the treatment of rheumatoid arthritis RA for the context of Saudi Arabia, by the Saudi Society for Rheumatology (SSR).MethodsThe process followed the GRADE-ADOLOPMENT methodology, and the reporting adhered to the RIGHT-Ad@pt checklist. Working groups included a coordination group and a 19-member panel representing different stakeholder groups. The Evidence to Decision (EtD) tables included evidence on health effects from the source guideline and contextual information from the Saudi setting.ResultsThe panel prioritized and adapted five recommendations from the source guideline. The process led to modifying two out of the five prioritized recommendations, all listed here. In naive patients with low disease activity, methotrexate (MTX) is conditionally recommended over sulfasalazine (SSZ) (modified direction); hydroxychloroquine (HCQ) is conditionally recommended over SSZ (unmodified). Initiation of csDMARDs with short-term glucocorticoids is conditionally recommended over csDMARDs alone in naive patients with moderate to high disease activity (modified direction). Switch to subcutaneous MTX is conditionally recommended over addition/switch to alternative DMARD(s) in patients taking oral MTX who are not at target (unmodified). Discontinuation of MTX is conditionally recommended over gradual discontinuation of the bDMARD or tsDMARD for patients taking MTX plus a bDMARD or tsDMARD who wish to discontinue a DMARD (unmodified).ConclusionRheumatologists practicing in Saudi Arabia can use the adoloped recommendations generated by this project while adopting the rest of the recommendations from the 2021 ACR guidelines.

Project description:BackgroundFoot problems in people with rheumatoid arthritis (RA) are highly prevalent and have a substantial impact on quality of life. Healthcare professionals from various professions can be involved in the management of these foot problems. There is currently no consensus on optimal management. Therefore, the aim of the present study was to develop multidisciplinary recommendations for the management of foot problems in people with RA in the Netherlands.MethodsThe recommendations were based on research evidence and consensus among experts, following published strategies for the development of practice recommendations. The expert group was composed of 2 patients and 22 experienced professionals (rheumatologists, rehabilitation physicians, orthopaedic surgeons, specialized nurses, podiatrists, orthopaedic shoe technicians, pedicurists, and researchers) in the Netherlands. For each developed recommendation i) the level of evidence was determined, and ii) the level of agreement (among the expert group) was set by an anonymous voting procedure using a numeric rating scale. The mean and range of the level of agreement for each recommendation was calculated. A recommendation was approved when ≥70% of the expert group voted an NRS-agreement ≥7.ResultsIn total, 41 recommendations were developed. Two recommendations concerned a framework for diagnosis and treatment. Thirty-nine recommendations on foot care were developed: seven on diagnosis (including check-ups of feet and shoes and diagnostic imaging), 27 on treatment (including corticosteroid injections, foot surgery, therapeutic shoes, foot orthoses, exercise therapy, toe-orthoses and toenail-braces, treatment of toenails and skin), four on communication, and one on organisation of RA-related footcare. All recommendations were approved by the expert group. The percentage score of NRS-agreement ≥7 ranged from 80 to 100%.ConclusionsThese are the first published multidisciplinary recommendations specific to the management of foot problems in people with RA. Multidisciplinary recommendations can provide guidance in timely referrals and access to adequate footcare. More research is needed to strengthen the evidence on diagnosis and treatment of RA-related foot problems. These national recommendations may be a first step towards developing international multidisciplinary recommendations for the management of foot problems in RA.

Project description:ObjectiveExaggerated neutrophil activation and formation of neutrophil extracellular traps (NETs) are linked to inflammation and autoimmunity, including rheumatoid arthritis (RA). However, whether NETs are present in the circulation of RA patients and contribute to inflammation and disease progression has not been carefully addressed. We undertook this study to assess markers of neutrophil activation and NET formation in plasma samples, investigating whether they add clinical value in improving the determination of prognosis and monitoring in RA patients.MethodsMarkers of neutrophil activation (calprotectin) and cell death (NETs) were analyzed, using enzyme-linked immunosorbent assay, in serum and plasma obtained from patients in 3 cross-sectional RA cohorts and sex-matched healthy controls. A longitudinal inception cohort (n = 247), seen for a median follow-up of 8 years, was used for predictive analyses.ResultsMarkers of neutrophil activation and cell death were increased in RA patients compared to healthy individuals (P < 0.0001). Calprotectin levels correlated with the Clinical Disease Activity Index (r = 0.53, P < 0.0001) and could be used to distinguish between patients with disease in remission and those with active disease, an observation not seen when examining C-reactive protein levels. A biomarker panel consisting of anti-citrullinated protein antibody and calprotectin could predict erosive disease (odds ratio [OR] 7.5, P < 0.0001) and joint space narrowing (OR 4.9, P = 0.001). NET levels were associated with markers of inflammation (P = 0.0002). Furthermore, NETs and a "neutrophil activation signature" biomarker panel had good predictive value in identifying patients who were developing extraarticular nodules (OR 5.6, P = 0.006).ConclusionNeutrophils undergo marked activation and cell death in RA. Neutrophil biomarkers can provide added clinical value in the monitoring and prognosis of RA patients and may allow for early preventive treatment intervention.

Project description:In 15 patients with rheumatoid arthritis the baseline expression (t=0) of type I IFN-regulated genes was determined in peripheral blood cells (PAXgene) using cDNA-microarrays and compared to levels one month after (t=1) anti-TNF treatment (infliximab). Therefore, we used 43K cDNA microarrays from the Stanford Functional Genomics Facility (http://microarray.org/sfgf/) printed on aminosilane-coated slides containing ~20.000 unique genes. Only one batch of arrays was used for all experiments. First DNA spots were UV-cross linked to the slide using 150-300 mJoules. Sample preparation and microarray hybridization were performed as described previously (1,2). Data storage and filtering was performed using the Stanford Microarray Database (http://genome-www5.stanford.edu//) as described previously. 1. van der Pouw Kraan TC, Wijbrandts CA, van Baarsen LG, Voskuyl AE, Rustenburg F, Baggen JM et al.: Rheumatoid arthritis subtypes identified by genomic profiling of peripheral blood cells: assignment of a type I interferon signature in a subpopulation of patients. Ann Rheum Dis 2007, 66: 1008-1014. 2. van der Pouw Kraan TC, van Baarsen LG, Rustenburg F, Baltus B, Fero M, Verweij CL: Gene expression profiling in rheumatology. Methods Mol Med 2007, 136: 305-327. Abbreviations: - Bnrs are the different patients analyzed - PAX or Paxgene indicates the total RNA was isolated from peripheral blood obtained in PAXgene tubes - CRS: common reference sample: We made a common reference that consisted of a mixture of mRNAs isolated from 11 different cell lines (Perou CM, Jeffrey SS, van de RM et al. Distinctive gene expression patterns in human mammary epithelial cells and breast cancers. Proc Natl Acad Sci U S A. 1999; 96:9212-9217) supplemented with RNA from rheumatoid synovial tissue, fibroblasts, and activated peripheral blood mononuclear cells (PBMCs). - PMT: photomultiplier tube: the sensitivity/intensity of the scanner can be adjusted to prevent spot saturation. Compound Based Treatment: anti-TNF (infliximab)

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When Patients Write the Guidelines: Patient Panel Recommendations for the Treatment of Rheumatoid Arthritis.

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When Patients Write the Guidelines: Patient Panel Recommendations for the Treatment of Rheumatoid Arthritis.

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