Remission in Rheumatoid Arthritis: Working Toward Incorporation of the Patient Perspective at OMERACT 12

2015 ◽  
Vol 43 (1) ◽  
pp. 203-207 ◽  
Author(s):  
Lilian H. van Tuyl ◽  
Martina Sadlonova ◽  
Bev Davis ◽  
Caroline Flurey ◽  
Niti Goel ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Qualitative Research ◽  
Health Professionals ◽  
Working Group ◽  
Research Agenda ◽  
Patient Perspective ◽  
Disease Flare ◽  
Methodological Challenges ◽  
Disease Questionnaire ◽  
Selection Of

Objective.The treatment of rheumatoid arthritis (RA) should target patient-relevant outcomes, making patient perspective on remission essential. In 2010, patients, physicians, health professionals, and researchers at the Outcome Measures in Rheumatology (OMERACT) conference developed an ambitious research agenda to study the concept of remission. Qualitative research has since helped us understand the concept of remission from the patient perspective.Methods.During OMERACT 12, the OMERACT working group on patient perspective on remission in RA elaborated on data generated to date and discussed the methodological challenges ahead. Challenges included (1) selection of domains, (2) choice of a patient remission definition or a single domain to add to the current remission definition, and (3) the importance of pain in defining remission from a patient perspective.Results.Focus in the coming years will be on increasing our understanding by identifying the most important domains from the patient perspective regarding remission and investigating how these domains can be measured. Investigation into the Rheumatoid Arthritis Impact of Disease questionnaire, disease flare, as well as the concordance of domains from our ongoing remission survey is appropriate. More data and further discussions are needed to decide on the next steps.Conclusion.Progress summarized over 4 years highlights the main methodological challenges discussed within the working group on patient perspective on remission in RA during OMERACT 12.

scholarly journals AB1335-HPR HEALTH PROFESSIONALS’ PERSPECTIVE ON THE BENEFITS AND RISKS OF LOW-DOSE GLUCOCORTICOIDS IN RHEUMATOID ARTHRITIS – AN INTERNATIONAL SURVEY OF 444 HEALTH PROFESSIONALS

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1955.1-1956
Author(s):  
T. Santiago ◽  
M. Voshaar ◽  
M. De Wit ◽  
P. Carvalho ◽  
M. Boers ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Adverse Events ◽  
Health Professionals ◽  
Patient Perspective ◽  
Online Survey ◽  
Low Dose ◽  
Low Doses ◽  
Research Support ◽  
Serious Adverse Events ◽  
Patient Organizations

Background:The Glucocorticoid Low-dose Outcome in Rheumatoid Arthritis Study (GLORIA) is an international investigator-initiated pragmatic randomized trial designed to study the effects of low-dose glucocorticoids (GCs) in elderly patients with Rheumatoid Arthritis (RA).The research team is also committed to promote a better understanding of the risks and benefits of these drugs among health professionals and patients. In order to achieve these goals, it is important to assess the current ideas and concerns of patients regarding GCs.Objectives:To evaluate the current patient perspective on the efficacy and risks of GCs in RA patients who are or have been treated with GCs.Methods:Patients with RA completed an online survey (with 5 closed questions regarding efficacy and safety) presented in their native language. RA patients were recruited through a variety of patient organizations representing three continents. Patients were invited to participate through national patient organizations. In the USA, patients were also invited to participate through MediGuard.org. Participants were asked for their level of agreement on a 5-point Likert scale.Results:1344 RA patients with exposure to GCs, from Brazil, USA, UK, Portugal, Netherlands, Germany and 24 other countries** participated: 89% female, mean age (SD) 52 (14) years and mean disease duration 13 (11) years. The majority of participants (84%) had ≥10 years of education. The duration of GCs exposure was 1.6 (4.2) years. The majority of participants had read articles or pamphlets on the benefits or harms of GC therapy.Regarding GCs efficacy (table 1), high levels of endorsement were found: about 2/3 of patients considered that GCs as very useful in their case, more than half considered that GCs were effective even at low doses, and agreed that GC improved RA symptoms within days.Regarding safety (table 1), 1/3 of the participants reported having suffered some form of serious adverse events (AEs) due to GCs, and 9% perceived this as “life-threatening. Adverse events had a serious impact on quality of life, according to about 1/3 of the respondents.Conclusion:Patients with RA exposed to GC report a strong conviction that GCs are very useful and effective for the treatment of their RA, even at low doses. This is accompanied by an important prevalence of serious AEs. Understanding the patient perspective can improve shared decision-making between patient and rheumatologist.Funding statement:This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 634886.Disclosure of Interests:Tânia Santiago: None declared, Marieke Voshaar Grant/research support from: part of phd research, Speakers bureau: conducting a workshop (Pfizer), Maarten de Wit Grant/research support from: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Consultant of: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Speakers bureau: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Pedro Carvalho: None declared, Maarten Boers: None declared, Maurizio Cutolo Grant/research support from: Bristol-Myers Squibb, Actelion, Celgene, Consultant of: Bristol-Myers Squibb, Speakers bureau: Sigma-Alpha, Frank Buttgereit Grant/research support from: Amgen, BMS, Celgene, Generic Assays, GSK, Hexal, Horizon, Lilly, medac, Mundipharma, Novartis, Pfizer, Roche, and Sanofi., José Antonio P. da Silva Grant/research support from: Pfizer, Abbvie, Consultant of: Pfizer, AbbVie, Roche, Lilly, Novartis

scholarly journals The OMERACT Rheumatoid Arthritis Magnetic Resonance Imaging (MRI) Scoring System: Updated Recommendations by the OMERACT MRI in Arthritis Working Group

2017 ◽  
Vol 44 (11) ◽  
pp. 1706-1712 ◽  
Author(s):  
Mikkel Østergaard ◽  
Charles G. Peterfy ◽  
Paul Bird ◽  
Frédérique Gandjbakhch ◽  
Daniel Glinatsi ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Magnetic Resonance Imaging ◽  
Magnetic Resonance ◽  
Working Group ◽  
Scoring System ◽  
Research Agenda ◽  
Image Resolution ◽  
Sensitivity To Change ◽  
Resonance Imaging ◽  
Magnetic Resonance Imaging Mri

Objective.The Outcome Measures in Rheumatology (OMERACT) Rheumatoid Arthritis (RA) Magnetic Resonance Imaging (MRI) scoring system (RAMRIS), evaluating bone erosion, bone marrow edema/osteitis, and synovitis, was introduced in 2002, and is now the standard method of objectively quantifying inflammation and damage by MRI in RA trials. The objective of this paper was to identify subsequent advances and based on them, to provide updated recommendations for the RAMRIS.Methods.MRI studies relevant for RAMRIS and technical and scientific advances were analyzed by the OMERACT MRI in Arthritis Working Group, which used these data to provide updated considerations on image acquisition, RAMRIS definitions, and scoring systems for the original and new RA pathologies. Further, a research agenda was outlined.Results.Since 2002, longitudinal studies and clinical trials have documented RAMRIS variables to have face, construct, and criterion validity; high reliability and sensitivity to change; and the ability to discriminate between therapies. This has enabled RAMRIS to demonstrate inhibition of structural damage progression with fewer patients and shorter followup times than has been possible with conventional radiography. Technical improvements, including higher field strengths and improved pulse sequences, allow higher image resolution and contrast-to-noise ratio. These have facilitated development and validation of scoring methods of new pathologies: joint space narrowing and tenosynovitis. These have high reproducibility and moderate sensitivity to change, and can be added to RAMRIS. Combined scores of inflammation or joint damage may increase sensitivity to change and discriminative power. However, this requires further research.Conclusion.Updated 2016 RAMRIS recommendations and a research agenda were developed.

Fatigue

2020 ◽  
pp. 251-258
Author(s):  
Emma Dures ◽  
Neil Basu
Keyword(s):  
Rheumatoid Arthritis ◽  
Health Beliefs ◽  
Societal Perspective ◽  
Work Disability ◽  
Research Agenda ◽  
Healthcare Costs ◽  
Patient Perspective ◽  
Pain Disability ◽  
Societal Burden

Fatigue in rheumatoid arthritis (RA) is associated with inflammation, pain, disability, sleep, depression, and health beliefs, implying complex, multicausal pathways comprising differing combinations of variables. From a patient perspective, it is a common, overwhelming, and distressing symptom. From a societal perspective, fatigue is a significant predictor of high healthcare costs and the main reason for work disability and loss. This chapter will highlight the role of patients in establishing the importance of the symptom, including the proposal that it should be measured in studies of RA whenever possible. Acknowledgement of fatigue as a patient priority is a relatively recent development, and highlights the value of collaborating with patients in shaping the research agenda. There will be discussion of the scale of fatigue in RA, including data on prevalence and descriptions of its nature and impact. Research has established the unpredictable and unearned nature of RA-related fatigue with its physical, cognitive, and emotional components, and identified the associated individual and societal burden. This will be followed by conceptual models informing our understanding of the biology of rheumatoid arthritis-related fatigue, the role of bioinformatics, and the challenges of unravelling the mechanisms of this multidimensional symptom. Finally, the evidence for interventions and treatments to alleviate fatigue will be presented, with a focus on non-pharmacological approaches to support fatigue self-management.

Sharing Indigenous Foods Through Stories and Recipes

2020 ◽  
pp. 1-5
Author(s):  
Kelly Skinner ◽  
Hannah Tait Neufeld ◽  
Emily Murray ◽  
Suzanne Hajto ◽  
Laurie Andrews ◽  
...  
Keyword(s):  
Knowledge Transfer ◽  
Indigenous Peoples ◽  
Health Professionals ◽  
Working Group ◽  
Cross Cultural ◽  
Traditional Food ◽  
Traditional Foods ◽  
The Creation ◽  
Indigenous Foods ◽  
Selection Of

Participants at the second National Gathering of the Aboriginal Nutrition Network (ANN) were encouraged to submit their favourite traditional recipes. Approximately 40 were received, and a volunteer working group contacted contributors to assist in the creation of a recipe resource with a selection of 12 recipes that included traditional ingredients to promote Indigenous foodways. All contributors were interviewed to share stories about their recipes. Each recipe was then tested, photographed, and developed into a resource handout that was disseminated to a variety of stakeholders. Afterwards, a brief survey was conducted with ANN recipients of the recipes (n = 23) to evaluate the recipe collection. When asked, “Prior to learning about this resource, was a collection of recipes using traditional foods something that you or the communities you work with were interested in?” all respondents answered yes. Nearly all found the recipes easy to follow (91%), and that they were applicable to the interests or needs of the communities they work with (83%). Preserving recipes and building opportunities for dietitians and other health professionals to contribute to traditional food recipe collections facilitates increased knowledge transfer, enhanced cross-cultural understanding, and is generally a useful tool for those working with Indigenous Peoples in Canada.

Patient Perspective on Remission in Rheumatoid Arthritis

2011 ◽  
Vol 38 (8) ◽  
pp. 1735-1738 ◽  
Author(s):  
LILIAN H.D. van TUYL ◽  
JOSEF S. SMOLEN ◽  
GEORGE A. WELLS ◽  
MARIEKE SCHOLTE-VOSHAAR ◽  
WIJNANDA HOOGLAND ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Clinical Trials ◽  
Disease Activity ◽  
Research Agenda ◽  
Patient Perspective ◽  
Daily Life ◽  
Treatment Goal ◽  
Considerable Research ◽  
Definition Of

Absence of disease activity, or remission, is the most important treatment goal for patients with rheumatoid arthritis (RA). Since a new preliminary definition of remission in RA for clinical trials has been proposed, we investigated what determinants of disease activity patients associate with a state of remission and whether dimensions of impact of disease on daily life are involved. Our report summarizes progress of a workshop at OMERACT 10 on the patient perspective on remission in RA, including the results of a short pre-conference survey among patients, the discussions among the participants and a research agenda resulting from these discussions. This initial OMERACT workshop on remission from the patient perspective showed that there is a great interest among patients, physicians, and researchers to study the concept of remission, taking into account measures that patients indicate as important, but that there is a lack of data on appropriate measures, resulting in a considerable research agenda.

A novel approach utilizing laser acupuncture teletherapy for management of elderly-onset rheumatoid arthritis: A randomized clinical trial

2021 ◽  
pp. 1357633X2110098
Author(s):  
Aya Sedky Adly ◽  
Afnan Sedky Adly ◽  
Mahmoud Sedky Adly ◽  
Mohammad F Ali
Keyword(s):  
Rheumatoid Arthritis ◽  
Virtual Reality ◽  
Elderly Patients ◽  
Aerobic Exercise ◽  
Health Professionals ◽  
Post Treatment ◽  
Laser Acupuncture ◽  
Virtual Reality Training ◽  
Significant Difference ◽  
Elderly Onset

Introduction Rheumatoid arthritis (RA) disease is a systemic progressive inflammatory autoimmune disorder. Elderly-onset RA can be assumed as a benign form of RA. Until recently, face-to-face therapeutic sessions between health professionals and patients are usually the method of its treatment. However, during pandemics, including coronavirus disease 2019 (COVID-19), teletherapeutic sessions can extensively increase the patient safety especially in elderly patients who are more vulnerable to these infections. Thus, the aim of this study was to evaluate a novel teletherapy approach for management of elderly patients suffering from RA by utilizing laser acupuncture. Methods A teletherapy system was used for management of elderly patients suffering from RA. Sixty participants were allocated randomly into two groups and the ratio was 1:1. Patients in the first group were treated with laser acupuncture and telerehabilitation sessions, which consisted of aerobic exercise and virtual reality training. Patients in the second group received telerehabilitation sessions, which consisted of aerobic exercise and virtual reality training. Evaluation of patients was done by using the Health Assessment questionnaire (HAQ), the Rheumatoid Arthritis Quality of Life (RAQoL) questionnaire, and the analysis of interleukin-6 (IL-6), serum C-reactive protein (CRP), plasma adenosine triphosphate (ATP) concentration and plasma malondialdehyde (MDA). Results A statistically significant difference was found in CRP, RAQoL, IL-6 and MDA between the pre- and post-treatments in the first group ( p < 0.05) favouring the post-treatment group, while the HAQ showed a statistically significant difference between pre- and post-treatments ( p < 0.05) in both groups. Statistically significant post-treatment differences were also observed between the two groups ( p < 0.05) in RAQoL, CRP, ATP and MDA, favouring the first group. Discussion Laser acupuncture teletherapy could be suggested as a reliable treatment method for elderly patients suffering from RA, as it can provide a safe and effective therapeutic approach. Teletherapy provided safer access to health professionals and patients while giving a high patient satisfaction value with a relatively lower cost (ClinicalTrials.gov Identifier: NCT04684693).

scholarly journals Distinct Roles of Vav Family Members in Adaptive and Innate Immune Models of Arthritis

Biomedicines ◽  
2021 ◽  
Vol 9 (6) ◽  
pp. 695
Author(s):  
Javier Conde ◽  
Isabel Fernández-Pisonero ◽  
Myriam Cuadrado ◽  
Antonio Abad ◽  
Javier Robles-Valero ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
T Cells ◽  
Family Members ◽  
Experimental Models ◽  
Innate Immune ◽  
Main Role ◽  
Zymosan A ◽  
Proliferation And Differentiation ◽  
Signal Transduction Proteins ◽  
Selection Of

Genetic evidence suggests that three members of the VAV family (VAV1, VAV2 and VAV3) of signal transduction proteins could play important roles in rheumatoid arthritis. However, it is not known currently whether the inhibition of these proteins protects against this disease and, if so, the number of family members that must be eliminated to get a therapeutic impact. To address this issue, we have used a collection of single and compound Vav family knockout mice in experimental models for antigen-dependent (methylated bovine serum albumin injections) and neutrophil-dependent (Zymosan A injections) rheumatoid arthritis in mice. We show here that the specific elimination of Vav1 is sufficient to block the development of antigen-induced arthritis. This protection is likely associated with the roles of this Vav family member in the development and selection of immature T cells within the thymus as well as in the subsequent proliferation and differentiation of effector T cells. By contrast, we have found that depletion of Vav2 reduces the number of neutrophils present in the joints of Zymosan A-treated mice. Despite this, the elimination of Vav2 does not protect against the joint degeneration triggered by this experimental model. These findings indicate that Vav1 is the most important pharmacological target within this family, although its main role is limited to the protection against antigen-induced rheumatoid arthritis. They also indicate that the three Vav family proteins do not play redundant roles in these pathobiological processes.

Accounting for natural disasters from a historical perspective: A literature review and research agenda

2021 ◽  
Vol 26 (2) ◽  
pp. 179-204
Author(s):  
Massimo Sargiacomo ◽  
Stefania Servalli ◽  
Serena Potito ◽  
Antonio D’Andreamatteo ◽  
Antonio Gitto
Keyword(s):  
Natural Disasters ◽  
Economic History ◽  
Research Agenda ◽  
Historical Research ◽  
Future Research ◽  
Research Topics ◽  
Open Research ◽  
Emerging Themes ◽  
Published Research ◽  
Selection Of

This study offers an analysis of published historical research on accounting for natural disasters. Drawing on the insights provided by an examination of 35 accounting/business/economic history and generalist journals, 11 articles have been selected and analysed. The analysis conducted on the scattered literature identified the emerging themes, disasters investigated, periods of time explored and main contributions of published research. The analysis is extended by the examination of some key conferences of interdisciplinary history associations, and of the eventual journals/issues where the papers presented were published. The investigation has also been complemented by a brief selection of books showing historical analyses of diverse disasters, typologies and periods of investigation. The stimuli provided by the study have helped to portray the main features of an open research agenda, highlighting possible future research topics and suggesting ancient and recent disasters’ loci to be investigated worldwide.

scholarly journals PARE0005 INTEGRATED REFERRAL OF NEWLY DIAGNOSED RHEUMATOID ARTHRITIS PATIENT TO EDUCATION AND SUPPORT RESOURCES DELIVERED BY PATIENT LED ORGANISATION

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1288.1-1289
Author(s):  
I. Mcnicol ◽  
A. Bosworth ◽  
C. Jacklin ◽  
J. Galloway
Keyword(s):  
Rheumatoid Arthritis ◽  
Health Professional ◽  
Health Professionals ◽  
Quality Standard ◽  
Self Management ◽  
Pharmaceutical Companies ◽  
National Audit ◽  
Advisory Boards ◽  
The Right ◽  
The Impact

Background:NRAS follows best practice, evidence-based standards in all we do. Whilst huge strides have been made in the diagnosis and treatment of RA, the impact on quality of life can be significant and for many this disease remains hard to come to terms with. NRAS services and resources can improve the outcomes of people with RA/Adult JIA through a framework of supported self-management resources tailored to individual need. It is particularly important to provide the right support at the beginning of a person’s journey with RA, when unhelpful health beliefs, anxiety and incorrect information can influence how someone responds to prescribed medication and treatment thus impeding their ability to achieve the best outcomes. We know, for example, that many people do not take their medication as prescribed which reduces their chances of achieving remission or low disease activity state.Objectives:To demonstrate that by referring patients online as part of a quality improvement programme to NRAS Right Start Service, we can show improved outcomes for patients with early RA when measured by the MSKHQ. Referred patients will benefit by: a) Better understanding what RA is; b) knowing how it can affect them; c) getting the right support; d) feeling more in control; receiving a tailored pack of information that meets their personal needs; e) be able to talk to a like-minded person who has lived with RA. It’s a 4 step process which starts with the health professional referring their patient to NRAS on line. NICE Quality Standard 3 states that “Adults with rheumatoid arthritis are given opportunities throughout the course of their disease to take part in educational activities that support self-management.” Our service enables health professionals to meet their responsibilities against this national quality standard.Methods:In preparation for the introduction of this service at BSR congress 2019, an audit of the NRAS helpline service was undertaken at the end of 2018 and remains on going. Currently we have 224 responses which have been analysed against specific criteria. An Advisory Board comprising 7 clincians, from different hospitals was appointed to work with NRAS on this important research.Results:In the helpline audit, when asked ‘how concerned are you about your disease’?, alarmingly, 78% of those surveyed scored their level of concern about their disease at 7 or higher out of 10, while only 8% scored it at 5 or below. When asked about the emotional effects of their RA, 62% scored it as 7 or more where 10 was the worst possible impact. 94% of survey respondents said that they would definitely or very likely recommend NRAS and its services to another person. These results led to the development of New2RA Right Start launched in 2019, whereby health professionals across the UK can refer their patients directly to NRAS via a consented online referral which is fully GDPR compliant. To date (31stJan, 2020), we have made calls to 101 patients, from 24 referring hospitals of which 55 have been successfully completed, 34 have had information sent through the post although our helpline team were unable to speak to them, and 12 remain open. Data analysis on the service is being carried out by King’s College Hospital London, comparing the results of patients who have been referred to Right Start within the national audit who have completed a baseline and 3 month follow up MSKHQ and patients in the audit who have not participated in Right Start.Conclusion:Anecdotally, we have had a tremendous response to this service from both patients and referring health professionals. We await data from King’s on the above figures, which we will have within the next 2 months and further data, should this abstract be accepted, will be available prior to June 2020. Right Start enables health professionals to comply with QS3 above, of the NICE Quality Standards in RA, one of the key standards against which they are being audited in the NEIAA national audit. Once data and write up in a peer review journal has been published we plan to roll this service out to people with more established disease.References:[1]To be done, not included in word count.Acknowledgments:I would like to thank Ailsa Bosworth MBE, Clare Jacklin, and James GallowayDisclosure of Interests:Iain McNicol Shareholder of: GSK, Ailsa Bosworth Speakers bureau: a number of pharmaceutical companies for reasons of inhouse training, advisory boards etc., Clare Jacklin Grant/research support from: NRAS has received grants from pharmaceutical companies to carry out a number of projects, Consultant of: I have been paid a speakers fee to participate in advisory boards, in house training of staff and health professional training opportunities, Speakers bureau: Various pharma companies, James Galloway: None declared

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