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There were hundreds of “abstracts” presented at the European League Against Rheumatism (EULAR) meeting this month in Rome, Italy. To have an abstract presented at EULAR, the authors (doctors, scientists, experts) were required to meet specific standards.
We combed through all of the presentations, and will continue to bring to you the ones that ‘caught our eye’. What we love most about the collection of abstracts presented at EULAR are the diverse backgrounds, geographies and perspectives of the global arthritis community. Here are just a few, with more on the way, so check back soon.
Title: PATIENT PREFERENCES IN THE CHOICE OF DISEASE MODIFYING ANTI-RHEUMATIC DRUGS
Authors: K. Krüger, R. Alten, J. Schiffner-Rohe, O. S. Behmer, G. Schiffhorst, J. Rellecke, H.-D. Nolting
Takeaway: The route of administration and combination therapy with methotrexate are important preferences considered by RA patients. Specifically, they prefer medicines they can take orally and not having to take other drugs along with methotrexate.
Why does this matter to patients?: “Our study sheds some light on the importance that patients attribute to different characteristics of their medicines (e.g. mode and frequency of administration). “Effectiveness” is of course the most important aspect. But does it matter to patients whether they receive injections/infusions or take a pill (with effectiveness held constant)? Our study demonstrates that patients have strong preferences for specific attributes of medicines. Generally we believe that improving convenience and acceptability of a therapy regimen for patients (and their families) is an important issue that should be considered by industries developing therapies as well as regulators. That’s why we think that our study is of some relevance for patients.”- Dr. Hans-Dieter Nolting, Co-author
Tags: Rheumatoid arthritis, patient preferences, combination therapy, methotrexate, patient-reported outcomes
Title: A FAIRY TALE FROM THE LAND OF ANDERSEN – ENABLING PATIENTS TO CONTRIBUTE TO ARTHRITIS RESEARCH
Author: J. Primdahl
Takeaway: Through his experiences with patient involvement in the research department of a Danish hospital, Dr. Primdahl realized the important of patient input in rheumatology research.
Why does this matter to patients?: “We find that it is important to get started and gradually build on the experiences. We constantly have to be aware of where we are going and how it works for the users – and for us. Which criteria should we use when selecting users to be involved, what kind of training do the users need, finding a common language we can use, differences in “power” and whether the users feel able to contribute with their views and experiences and more? User involvement is a very hot topic nationally and internationally, but in our view it should never be just another “tick in a box”.”- Dr. Jette Primdahl, Abstract speaker
Tags: Patient-reported outcomes, rheumatology
Title: PATIENT PERSPECTIVES ON FOOTWEAR IN RHEUMATOID ARTHRITIS – A PATIENT-LED QUALITATIVE STUDY
Author: S. de Souza, H. Lempp
Takeaway: Women with RA feel very self-conscious about their footwear. They also found that shoes recommended by doctors are seen as unattractive. Moreover patients expect more thought from their doctors about their footwear.
Why does this matter to patients?: “The foot care study was entirely patient-led (first author), we have so-called ‘patient experts/carers’ in our academic and clinical department of Rheumatology at King’s College London and King’s College Hospital, London. They are embedded in all our research (and rheumatology outpatient health service improvement, under – and post graduate education) at all stages of the research cycle, e.g. from idea of a study, writing the grant, when funding is accepted, they are helping with interviewing researcher for the project, research design and management, data analysis, dissemination (conferences. publications), evaluation and implementation of the findings. This has been introduced in 2005 in our department and I am the academic lead.
In the UK this is now a national policy that patients/carers have to be involved in research, otherwise the funding bodies will not cough up the money. This is in brief what [Dr. de Souza’s] study is all about, she identified a problem in the clinic, carried out a study with patients and staff and her recommendations are now considered and included in the annual review of patients with clinicians. So an important and great piece of work, which would not have happened without patients’ input. We also have an Independent Patient Group, of which [Dr. de Souza] and another person are chairs, who are keen and involved to improve the services in the clinic in collaboration with clinicians.”-Dr. Heidi Lempp, Co-author
Tags: Patient-reported outcomes, patient leadership, rheumatoid arthritis, footwear
Title: DEVELOPMENT OF A NOVEL PATIENT REPORTED OUTCOME (PRO) MEASURE: THE SYSTEMIC LUPUS ERYTHEMATOSUS (SLE) STEROID QUESTIONNAIRE (SSQ)
Authors: S.D. Mathias, P. Berry, J. deVries, A. Askanase, K. Pascoe, H. Colwell, D. Chang
Takeaway: The SSQ is the first comprehensive patient-reported outcome questionnaire designed with significant patient input.
Why does this matter to patients?: This questionnaire is “the first of its kind, developed with patient input” and “developed following rigorous standards.”- Dr. Susan D. Mathias, Author
Tags- Patient-reported outcomes, questionnaire, Lupus, steroids
Title: PERFORMANCE OF PATIENT REPORTED OUTCOMES IN THE ASSESSMENT OF RHEUMATOID ARTHRITIS DISEASE ACTIVITY: THE EXPERIENCE OF THE ESPOIR COHORT
Authors: H. Che, B. Combe, J. Morel, O. Meyer, A. Cantagrel, L. Gossec, C. Lukas
Takeaway: The RAPID-3 demonstrated the most accurate relationship between patient-reported outcomes and actual disease activity.
Why does this matter to patients?: “This study reveals a moderate correlation between PROs and RA disease activity as assessed by traditional indices, with the highest correlations found for RAPID3.
Performance of PROs in assessing RA disease activity, is the best for a category of patients in remission or in a near-remission state. Indeed, PROs seem to be able to reliably determine remission status, a situation when a delayed visit to the rheumatologist can be considered acceptable. Moreover, PROs are increasing in popularity because they are inexpensive and may have potential to reduce the burden of clinical care.
This also contributes to stress the key-role of patients in their healthcare.”- Dr. Helene Che, Author
Tags: Patient-reported outcomes, RAPID-3, rheumatoid arthritis
Title: RAPID ACQUISITION OF DATA ON THE PATIENT PERSPECTIVE IN RHEUMATOID ARTHRTIS THROUGH A DIGITAL PORTAL
Authors: N. Goel, G. Cummins, J. Downing, L. van Tuyl
Takeaway: This study demonstrated that it is feasible to obtain fast, relevant responses regarding their thoughts on RA remission through an online portal.
Why does this matter to patients?: “Our research demonstrates the potential for patients to engage in – and help directly inform the design of – clinical trials, which are essential to improving health outcomes.”- Dr. Niti Goel, Author
Tags: Patient-reported outcome, rheumatoid arthritis, remission, digital survey
This past week, thousands of rheumatologists, arthritis experts, patient associations and industry convened in Rome, Italy, for the annual European League Against Rheumatism (#EULAR2015) conference.
It was scorching hot (90F+) and getting around town was a challenge (made harder by the recent elimination of Uber and other car service apps thanks to a strong and crippling taxi lobby). The days began early with lectures and ended late with group dinners. Overall, there was little doubt that a conference hosted by the Italians meant that people were sharp dressers and the coffee, pasta and pastries were delicious!
We’ll have extended coverage of the conference learnings, including interviews with attendees, in the coming weeks. Below is a short overview with important news that caught our eye, as well as a few photos of the action.
Are We Ready for Biosimilars?:
The topic of biologics and biosimilars were at the forefront of this year’s conference. A recent report written by Diana Skingle, who is the chair of EULAR’s Standing Committee of People with Arthritis/Rheumatism, outlines the current status of biosimilars as it concerns patients. For example, she discusses how in Europe, all biosimilar legislation must be reviewed by the European Medicines Agency (EMA). However, she says that if a biosimilar’s reference biologic has been deemed safe for many years, than the biosimilar does not need to go through the same studies. This is bad for patients because, by definition, biosimilars are not the same as biologics, and therefore their effects may not be the same. She also discusses how the EMA has no policies regarding switching, interchangeability, and substitution between biologics and biosimilars – yet. Therefore, patients and doctors always need to be aware that this is a possibility, and make decisions accordingly.
Dr. Krant’s take on this: “There are a wide variety of voices which both endorse and reject the potential benefits of this approach. It’s partly driven by economics, and largely driven by concerns about patient safety. Regarding economics, the large manufactures of biosimilars have deep experience in producing branded medicines. Biosimilars by their very nature, defy easy replication. The promised annualized cost savings with a biosimilar is 30%, in the best-case scenario (speculative). Our hope is that the safety and efficacy remains the same, but the financial burden becomes substantially lessened with biosimilars.”
Biologics Keep Us Working:
Continuing on the subjects of biologics, another recent study presented at EULAR showed that not only do biologics improve ones ability to consistently go to work, but also they significantly increase one’s productivity. The study compared multiple groups of those who had received biologics for their arthritis and a control group of those who had not received a biologic. It was found that those who had taken the biologic missed significantly less days of work than those who hadn’t. It was also found that when both groups were at work, those on biologics were far more productive.
Read more here:
We’re Tired of Our Fatigue:
Several studies detailing fatigue levels in patients with rheumatic diseases were also presented at EULAR. They found that 79% of patients reported that their level of fatigue had not been appropriately assessed for treated by their doctor. As a result, new criteria are being developed to properly assess medically significant levels of fatigue. However, it was also found that improvements in burden of disease did not necessarily correlate with improvements in level of fatigue. More work still needs to be done in terms of how to treat both the disease and the fatigue, but progress has certainly been made.
Read more here:
Photo Note: The poster section of EULAR – and all medical congresses – is one of the nerve centers of the meeting. This is where hundreds of ‘posters’ are presented, with details about research projects, their findings, or other observations. Posters and when they’re presented are catalogued in the massive course book, and each poster must be “defended” by the lead author, usually for two hours. The best posters are selected by a committee to be presented in a main hall or plenary session, at a podium. While some may think that this is an antiquated way to present information, many (including CreakyJoints) appreciate the face-to-face interaction with the professor or researcher, and while USB drives and the web abstract search has every study digitized, there’s something special about still printing out a poster, using thumb tacks to post it, and standing by meeting colleagues and friends to share the work. (Think 8th grade science fair format, but for adults studying rheumatology…!)