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2. Flemish network on rare connective tissue diseases (CTD):patient pathways in systemic sclerosis. First steps taken

Author

Piette, Y., Van den Bossche, F., Aerts, J., Aerts, N., Ajeganova, S., Badot, V., Berghen, N., Blockmans, D., Brusselle, G., Caeyers, N., De Decker, M., De Haes, P., De Cock, C., De Keyser, F., De Langhe, E., Delcroix, M., De Nutte, H., De Pauw, M., Depicker, A., De Sutter, A., De Sutter, J., Du Four, T., Frank, C., Goubau, J., Guiot, J., Gutermuth, J., Heeman, L., Houssiau, F., Hennes, I., Lenaerts, J., Lintermans, A., Loeys, B., Luyten, H., Maeyaert, B., Malfait, F., Moeyersoons, A., Mostmans, Y., Nijs, J., Poppe, B., Polfliet, K., Ruttens, D., Sabato, V., Schoeters, E., Slabbynck, H., Stuer, A., Tamirou, F., Thevissen, Kristof, Van Kersschaever, G., Vanneuville, B., Van Offel, J., Vanthuyne, M., Van Wabeke, J., Verbist, C., Vos, I., Westhovens, R., Wuyts, W., Yserbyt, J., Smith, V., Piette, Y., Van den Bossche, F., Aerts, J., Aerts, N., Ajeganova, S., Badot, V., Berghen, N., Blockmans, D., Brusselle, G., Caeyers, N., De Decker, M., De Haes, P., De Cock, C., De Keyser, F., De Langhe, E., Delcroix, M., De Nutte, H., De Pauw, M., Depicker, A., De Sutter, A., De Sutter, J., Du Four, T., Frank, C., Goubau, J., Guiot, J., Gutermuth, J., Heeman, L., Houssiau, F., Hennes, I., Lenaerts, J., Lintermans, A., Loeys, B., Luyten, H., Maeyaert, B., Malfait, F., Moeyersoons, A., Mostmans, Y., Nijs, J., Poppe, B., Polfliet, K., Ruttens, D., Sabato, V., Schoeters, E., Slabbynck, H., Stuer, A., Tamirou, F., Thevissen, Kristof, Van Kersschaever, G., Vanneuville, B., Van Offel, J., Vanthuyne, M., Van Wabeke, J., Verbist, C., Vos, I., Westhovens, R., Wuyts, W., Yserbyt, J., and Smith, V.

Abstract

Despite the low prevalence of each rare disease, the total burden is high. Patients with rare diseases encounter numerous barriers, including delayed diagnosis and limited access to high-quality treatments. In order to tackle these challenges, the European Commission launched the European Reference Networks (ERNs), cross-border networks of healthcare providers and patients representatives. In parallel, the aims and structure of these ERNs were translated at the federal and regional levels, resulting in the creation of the Flemish Network of Rare Diseases. In line with the mission of the ERNs and to ensure equal access to care, we describe as first patient pathways for systemic sclerosis (SSc), as a pilot model for other rare connective and musculoskeletal diseases. Consensus was reached on following key messages: 1. Patients with SSc should have multidisciplinary clinical and investigational evaluations in a tertiary reference expert centre at baseline, and subsequently every three to 5 years. Intermediately, a yearly clinical evaluation should be provided in the reference centre, whilst SSc technical evaluations are permissionably executed in a centre that follows SSc-specific clinical practice guidelines. In between, monitoring can take place in secondary care units, under the condition that qualitative examinations and care including interactive multidisciplinary consultations can be provided. 2. Patients with early diffuse cutaneous SSc, (progressive) interstitial lung disease and/or pulmonary arterial hypertension should undergo regular evaluations in specialised tertiary care reference institutions. 3. Monitoring of patients with progressive interstitial lung disease and/or pulmonary (arterial) hypertension will be done in agreement with experts of ERN LUNG.

Published
2024

3. Flemish network on rare connective tissue diseases (CTD): patient pathways in systemic sclerosis. First steps taken

Author

Piette, Y., primary, Van den Bossche, F., additional, Aerts, J., additional, Aerts, N., additional, Ajeganova, S., additional, Badot, V., additional, Berghen, N., additional, Blockmans, D., additional, Brusselle, G., additional, Caeyers, N., additional, De Decker, M., additional, De Haes, P., additional, De Cock, C., additional, De Keyser, F., additional, De Langhe, E., additional, Delcroix, M., additional, De Nutte, H., additional, De Pauw, M., additional, Depicker, A., additional, De Sutter, A., additional, De Sutter, J., additional, Du Four, T., additional, Frank, C., additional, Goubau, J., additional, Guiot, J., additional, Gutermuth, J., additional, Heeman, L., additional, Houssiau, F., additional, Hennes, I., additional, Lenaerts, J., additional, Lintermans, A., additional, Loeys, B., additional, Luyten, H., additional, Maeyaert, B., additional, Malfait, F., additional, Moeyersoons, A., additional, Mostmans, Y., additional, Nijs, J., additional, Poppe, B., additional, Polfliet, K., additional, Ruttens, D., additional, Sabato, V., additional, Schoeters, E., additional, Slabbynck, H., additional, Stuer, A., additional, Tamirou, F., additional, Thevissen, Kristof, additional, Van Kersschaever, G., additional, Vanneuville, B., additional, Van Offel, J., additional, Vanthuyne, M., additional, Van Wabeke, J., additional, Verbist, C., additional, Vos, I., additional, Westhovens, R., additional, Wuyts, W., additional, Yserbyt, J., additional, and Smith, V., additional

Published
2023
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8. Patient and rheumatologist perspectives on glucocorticoids: an exercise to improve the implementation of the European League Against Rheumatism (EULAR) recommendations on the management of systemic glucocorticoid therapy in rheumatic diseases

Author

van der Goes, M C, Jacobs, J W, Boers, M, Andrews, T, Blom-Bakkers, M A, Buttgereit, F, Caeyers, N, Choy, E H, Cutolo, M, Da Silva, J A, Guillevin, L, Holland, M, Kirwan, J R, Rovensky, J, Saag, K G, Severijns, G, Webber, S, Westhovens, R, and Bijlsma, J W

Published
2010
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10. Defining conditions where long-term glucocorticoid treatment has an acceptably low level of harm to facilitate implementation of existing recommendations: viewpoints from an EULAR task force

Author

Strehl, C., Bijlsma, J.W.J., de Wit, M., Boers, M., Caeyers, N., Cutolo, M., Dasgupta, B., Dixon, W.G., Geenen, R., Huizinga, T.W.J., Kent, A., Ladefoged De Thurah, A., Listing, J., Mariette, X., Ray, D.W., Scherer, H.U., Seror, R., Spies, C.M., Tarp, S., Wiek, D., Winthrop, K.L., Buttgereit, F., Stress and self-regulation, Leerstoel Geenen, Rheumatology, AII - Inflammatory diseases, Ethics, Law & Medical humanities, EMGO - Quality of care, Epidemiology and Data Science, Stress and self-regulation, and Leerstoel Geenen

Subjects
medicine.medical_specialty, Consensus, Time Factors, Drug-Related Side Effects and Adverse Reactions, Advisory Committees, Immunology, Alternative medicine, Drug Administration Schedule, General Biochemistry, Genetics and Molecular Biology, 03 medical and health sciences, 0302 clinical medicine, Rheumatology, Risk Factors, Prednisone, Rheumatic Diseases, medicine, Humans, Immunology and Allergy, 030212 general & internal medicine, Adverse effect, Intensive care medicine, Glucocorticoids, 030203 arthritis & rheumatology, Dose-Response Relationship, Drug, business.industry, medicine.disease, Long-Term Care, Long-term care, Harm, Rheumatoid arthritis, Physical therapy, business, Rheumatism, Glucocorticoid, medicine.drug
Abstract

There is convincing evidence for the known and unambiguously accepted beneficial effects of glucocorticoids at low dosages. However, the implementation of existing recommendations and guidelines on the management of glucocorticoid therapy in rheumatic diseases is lagging behind. As a first step to improve implementation, we aimed at defining conditions under which long-term glucocorticoid therapy may have an acceptably low level of harm. A multidisciplinary European League Against Rheumatism task force group of experts including patients with rheumatic diseases was assembled. After a systematic literature search, breakout groups critically reviewed the evidence on the four most worrisome adverse effects of glucocorticoid therapy (osteoporosis, hyperglycaemia/diabetes mellitus, cardiovascular diseases and infections) and presented their results to the other group members following a structured questionnaire for final discussion and consensus finding. Robust evidence on the risk of harm of long-term glucocorticoid therapy was often lacking since relevant study results were often either missing, contradictory or carried a high risk of bias. The group agreed that the risk of harm is low for the majority of patients at long-term dosages of ≤5 mg prednisone equivalent per day, whereas at dosages of >10 mg/day the risk of harm is elevated. At dosages between >5 and ≤10 mg/day, patient-specific characteristics (protective and risk factors) determine the risk of harm. The level of harm of glucocorticoids depends on both dose and patient-specific parameters. General and glucocorticoid-associated risk factors and protective factors such as a healthy lifestyle should be taken into account when evaluating the actual and future risk.

Published
2016
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12. Defining conditions where long-term glucocorticoid treatment has an acceptably low level of harm to facilitate implementation of existing recommendations: Viewpoints from an EULAR task force

Author

Stress and self-regulation, Leerstoel Geenen, Strehl, C., Bijlsma, J.W.J., de Wit, M., Boers, M., Caeyers, N., Cutolo, M., Dasgupta, B., Dixon, W.G., Geenen, R., Huizinga, T.W.J., Kent, A., Ladefoged De Thurah, A., Listing, J., Mariette, X., Ray, D.W., Scherer, H.U., Seror, R., Spies, C.M., Tarp, S., Wiek, D., Winthrop, K.L., Buttgereit, F., Stress and self-regulation, Leerstoel Geenen, Strehl, C., Bijlsma, J.W.J., de Wit, M., Boers, M., Caeyers, N., Cutolo, M., Dasgupta, B., Dixon, W.G., Geenen, R., Huizinga, T.W.J., Kent, A., Ladefoged De Thurah, A., Listing, J., Mariette, X., Ray, D.W., Scherer, H.U., Seror, R., Spies, C.M., Tarp, S., Wiek, D., Winthrop, K.L., and Buttgereit, F.

Published
2016

15. Helping Patients to Make Informed Decisions: The PARE Guide to Disseminate EULAR Recommendations Among Patients

Author

Stress and self-regulation, Leerstoel Geenen, Leerstoel Ridder, de Wit, M., Bakker, M., van Bodegom-Vos, L., Buch, M., Caeyers, N., Carluccio, A., Geenen, R., Greiff, R., Glüsing, B., Gossec, L., Kent, A., Poldema, I., Vliet Vlieland, T.P.M., Wiek, D., Schipper, K., Stress and self-regulation, Leerstoel Geenen, Leerstoel Ridder, de Wit, M., Bakker, M., van Bodegom-Vos, L., Buch, M., Caeyers, N., Carluccio, A., Geenen, R., Greiff, R., Glüsing, B., Gossec, L., Kent, A., Poldema, I., Vliet Vlieland, T.P.M., Wiek, D., and Schipper, K.

Published
2015

16. OP0245-PARE Helping Patients to Make Informed Decisions. The Pare Guide to Disseminate Eular Recommendations Among Patients

Author

De Wit, M., primary, Bakker, M., additional, van Bodegom-Vos, L., additional, Buch, M., additional, Caeyers, N., additional, Carluccio, A., additional, Geenen, R., additional, Greiff, R., additional, Glüsing, B., additional, Gossec, L., additional, Kent, A., additional, Poldema, I., additional, Vliet Vlieland, T., additional, Wiek, D., additional, and Schipper, K., additional

Published
2015
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17. EULAR evidence-based recommendations on the management of systemic glucocorticoid therapy in rheumatic diseases

Author

Hoes, JN, Jacobs, JW, Boers, M, Boumpas, D, Buttgereit, F, Caeyers, N, Choy, EH, and Pereira da Silva, JA

Subjects
Doenças Reumáticas, Glucocorticóides, Medicina Baseada na Evidência
Abstract

OBJECTIVE: To develop evidence-based recommendations for the management of systemic glucocorticoid (GC) therapy in rheumatic diseases. METHODS: The multidisciplinary guideline development group from 11 European countries, Canada and the USA consisted of 15 rheumatologists, 1 internist, 1 rheumatologist-epidemiologist, 1 health professional, 1 patient and 1 research fellow. The Delphi method was used to agree on 10 key propositions related to the safe use of GCs. A systematic literature search of PUBMED, EMBASE, CINAHL, and Cochrane Library was then used to identify the best available research evidence to support each of the 10 propositions. The strength of recommendation was given according to research evidence, clinical expertise and perceived patient preference. RESULTS: The 10 propositions were generated through three Delphi rounds and included patient education, risk factors, adverse effects, concomitant therapy (ie, non-steroidal anti-inflammatory drugs, gastroprotection and cyclo-oxygenase-2 selective inhibitors, calcium and vitamin D, bisphosphonates) and special safety advice (ie, adrenal insufficiency, pregnancy, growth impairment). CONCLUSION: Ten key recommendations for the management of systemic GC-therapy were formulated using a combination of systematically retrieved research evidence and expert consensus. There are areas of importance that have little evidence (ie, dosing and tapering strategies, timing, risk factors and monitoring for adverse effects, perioperative GC-replacement) and need further research; therefore also a research agenda was composed.

Published
2007

20. OP0006 Eular evidence-based recommendations on the management of medium to high dose systemic glucocorticoid therapy in rheumatic diseases

Author

Duru, N., primary, van der Goes, M.C., additional, Jacobs, J.W., additional, Andrews, T., additional, Boers, M., additional, Buttgereit, F., additional, Caeyers, N., additional, Cutolo, M., additional, Halliday, S., additional, da Silva, J.A., additional, Kirwan, J.R., additional, Ray, D., additional, Rovensky, J., additional, Severijns, G., additional, Westhovens, R., additional, and Bijlsma, J.W., additional

Published
2013
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21. Patient and rheumatologist perspectives on glucocorticoids: an exercise to improve the implementation of the European League Against Rheumatism (EULAR) recommendations on the management of systemic glucocorticoid therapy in rheumatic diseases

Author

van der Goes, M C, primary, Jacobs, J W G, additional, Boers, M, additional, Andrews, T, additional, Blom-Bakkers, M A M, additional, Buttgereit, F, additional, Caeyers, N, additional, Choy, E H, additional, Cutolo, M, additional, Da Silva, J A P, additional, Guillevin, L, additional, Holland, M, additional, Kirwan, J R, additional, Rovensky, J, additional, Saag, K G, additional, Severijns, G, additional, Webber, S, additional, Westhovens, R, additional, and Bijlsma, J W J, additional

Published
2009
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22. EULAR points to consider for including the perspective of young patients with inflammatory arthritis into patient-reported outcomes measures.

Author

Studenic P, Stamm TA, Mosor E, Bini I, Caeyers N, Gossec L, Kouloumas M, Nikiphorou E, Olsder W, Padjen I, Ramiro S, Stones S, Wilhelmer TC, and Alunno A

Subjects
Humans, Patient Reported Outcome Measures, Antirheumatic Agents therapeutic use, Arthritis
Abstract

Competing Interests: Competing interests: PS, TAS, EM, IB, NC, MK, EN, WO, IP, T-CW and AA: nothing to disclose. LGc: Personal fees from AbbVie, Amgen, Biogen, Celgene, Gilead, Janssen, Lilly, Novartis, Pfizer, Samsung Bioepis, Sanofi-Aventis, and UCB; grants from Lilly, Pfizer, and Sandoz, outside the submitted work. Sofia Ramiro: consultancy and/or speaking fees from AbbVie, Eli Lilly, MSD, Novartis, Sanofi and UCB. SS: employment by Envision Pharma Group; stock options in Envision Pharma Group; consultancy and/or speaking fees from 67 Health, Ampersand Health, Envision Pharma Group, Janssen, On The Pulse Consultancy, Parexel and Sheffield Hallam University.

Published
2022
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23. Young people's perspectives on patient-reported outcome measures in inflammatory arthritis: results of a multicentre European qualitative study from a EULAR task force.

Author

Mosor E, Studenic P, Alunno A, Padjen I, Olsder W, Ramiro S, Bini I, Caeyers N, Gossec L, Kouloumas M, Nikiphorou E, Stones S, Wilhelmer TC, and Stamm TA

Subjects
Adolescent, Female, Humans, Male, Patient Reported Outcome Measures, Arthritis, Juvenile diagnosis, Arthritis, Juvenile therapy, Arthritis, Psoriatic diagnosis, Arthritis, Psoriatic therapy, Arthritis, Rheumatoid, Spondylarthritis
Abstract

Introduction: Although patient-reported outcome measures (PROMs) are increasingly used in clinical practice and research, it is unclear whether these instruments cover the perspective of young people with inflammatory arthritis (IA). The aims of this study were to explore whether PROMs commonly used in IA adequately cover the perspective of young people from different European countries., Methods: A multinational qualitative study was conducted in Austria, Croatia, Italy and the Netherlands. Young people with either rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA), Still's disease, psoriatic arthritis (PsA) or spondyloarthritis (SpA), aged 18-35 years, participated in semistructured focus group interviews. Thematic analysis was used and data saturation was defined as no new emergent concepts in at least three subsequent focus groups., Results: Fifty-three patients (21 with RA/JIA/Still's, 17 with PsA, 15 with SpA; 72% women) participated in 12 focus groups. Participants expressed a general positive attitude towards PROMs and emphasised their importance in clinical practice. In addition, 48 lower level concepts were extracted and summarised into 6 higher level concepts describing potential issues for improvement. These included: need for lay-term information regarding the purpose of using PROMs; updates of certain outdated items and using digital technology for data acquisition. Some participants admitted their tendency to rate pain, fatigue or disease activity differently from what they actually felt for various reasons., Conclusions: Despite their general positive attitude, young people with IA suggested areas for PROM development to ensure that important concepts are included, making PROMs relevant over the entire course of a chronic disease., Competing Interests: Competing interests: PS reports grants from AbbVie, outside the submitted work; IP reports personal fees from Abbvie, personal fees from Novartis, personal fees from Roche, personal fees from Sandoz, personal fees from Sanofi, outside the submitted work; SR reports personal fees from AbbVie, personal fees from Eli Lilly, personal fees from MSD, personal fees from Novartis, personal fees from Sanofi, personal fees from UCB, outside the submitted work; LG reports grants and personal fees from Amgen, grants from Galapagos, grants and personal fees from Janssen, grants and personal fees from Lilly, grants and personal fees from Pfizer, grants from Sandoz, grants from Sanofi, personal fees from AbbVie, personal fees from BMS, personal fees from Biogen, personal fees from Celgene, personal fees from Gilead, personal fees from Novartis, personal fees from Samsung Bioepis, personal fees from Sanofi-Aventis, personal fees from UCB, outside the submitted work; EN reports personal fees from Abbvie, personal fees from Celltrion, personal fees from Gilead, personal fees from Lilly, personal fees from Pfizer, personal fees from Sanofi, outside the submitted work; SS reports personal fees from Actelion, personal fees from CISCRP, personal fees from Janssen, personal fees from Parexel, outside the submitted work; TAS reports grants from AbbVie, grants and personal fees from Roche, personal fees from Sanofi Genzyme, personal fees from Takeda, outside the submitted work., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Published
2021
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24. Person-focused care for young people with rheumatic and musculoskeletal diseases: young rheumatologists' and EULAR Young PARE perspectives.

Author

Alunno A, Studenic P, Nikiphorou E, Balážová P, van Nieuwkoop L, Ramiro S, Carubbi F, Richez C, Caeyers N, Gossec L, and Kouloumas M

Abstract

In recent years, the evolution of healthcare challenged the management of people with rheumatic and musculoskeletal diseases (RMDs). From disease-centred care to person-focused care, a holistic approach along with patient empowerment about their disease, improved the physician-patient relationship and allowed to achieve better outcomes with lower healthcare costs. Nevertheless, RMDs may occur from childhood to the old age and to date very few studies have addressed the needs and priorities of young people with RMDs. However, the image of RMDs is still associated with the elderly population. In this regard, the group of young people with arthritis and rheumatism in Europe (PARE) was recently developed within European League Against Rheumatism to represent the voice of the young affected and to carry out projects aiming for a better understanding of these specific aspects. This viewpoint discusses the needs and priorities of young people compared with adult people with RMDs, based on the available literature and on the results of the PARE Youth research project, aiming to identify the next steps of actions that need to be taken to improve the current situation., Competing Interests: Competing interests: None declared.

Published
2017
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25. The EULAR points to consider for use of antirheumatic drugs before pregnancy, and during pregnancy and lactation.

Author

Götestam Skorpen C, Hoeltzenbein M, Tincani A, Fischer-Betz R, Elefant E, Chambers C, da Silva J, Nelson-Piercy C, Cetin I, Costedoat-Chalumeau N, Dolhain R, Förger F, Khamashta M, Ruiz-Irastorza G, Zink A, Vencovsky J, Cutolo M, Caeyers N, Zumbühl C, and Østensen M

Subjects
Abnormalities, Drug-Induced prevention & control, Antirheumatic Agents adverse effects, Biological Products adverse effects, Biological Products therapeutic use, Delphi Technique, Female, Humans, Infant, Newborn, Maternal-Fetal Exchange, Pregnancy, Pregnancy Outcome, Prenatal Exposure Delayed Effects, Antirheumatic Agents therapeutic use, Lactation, Preconception Care methods, Pregnancy Complications drug therapy, Rheumatic Diseases drug therapy
Abstract

A European League Against Rheumatism (EULAR) task force was established to define points to consider on use of antirheumatic drugs before pregnancy, and during pregnancy and lactation. Based on a systematic literature review and pregnancy exposure data from several registries, statements on the compatibility of antirheumatic drugs during pregnancy and lactation were developed. The level of agreement among experts in regard to statements and propositions of use in clinical practice was established by Delphi voting. The task force defined 4 overarching principles and 11 points to consider for use of antirheumatic drugs during pregnancy and lactation. Compatibility with pregnancy and lactation was found for antimalarials, sulfasalazine, azathioprine, ciclosporin, tacrolimus, colchicine, intravenous immunoglobulin and glucocorticoids. Methotrexate, mycophenolate mofetil and cyclophosphamide require discontinuation before conception due to proven teratogenicity. Insufficient documentation in regard to fetal safety implies the discontinuation of leflunomide, tofacitinib as well as abatacept, rituximab, belimumab, tocilizumab, ustekinumab and anakinra before a planned pregnancy. Among biologics tumour necrosis factor inhibitors are best studied and appear reasonably safe with first and second trimester use. Restrictions in use apply for the few proven teratogenic drugs and the large proportion of medications for which insufficient safety data for the fetus/child are available. Effective drug treatment of active inflammatory rheumatic disease is possible with reasonable safety for the fetus/child during pregnancy and lactation. The dissemination of the data to health professionals and patients as well as their implementation into clinical practice may help to improve the management of pregnant and lactating patients with rheumatic disease., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

Published
2016
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