EULAR recommendations for the non-pharmacological management of systemic lupus erythematosus and systemic sclerosis

Ioannis Parodis; Charlotte Girard-Guyonvarc'h; Laurent Arnaud; Oliver Distler; Andrea Domján; Cornelia H M Van den Ende; Kim Fligelstone; Agnes Kocher; Maddalena Larosa; Martin Lau; Alexandros Mitropoulos; Mwidimi Ndosi; Janet L Poole; Anthony Redmond; Valentin Ritschl; Helene Alexanderson; Yvonne Sjöberg; Gunilla von Perner; Till Uhlig; Cecilia Varju; Johanna E Vriezekolk; Elisabet Welin; René Westhovens; Tanja A Stamm; Carina Boström

doi:10.1136/ard-2023-224416

EULAR recommendations for the non-pharmacological management of systemic lupus erythematosus and systemic sclerosis

Ann Rheum Dis. 2023 Aug 23:ard-2023-224416. doi: 10.1136/ard-2023-224416. Online ahead of print.

Authors

Ioannis Parodis^{1

2

3}, Charlotte Girard-Guyonvarc'h^{4

5}, Laurent Arnaud⁶, Oliver Distler⁷, Andrea Domján⁸, Cornelia H M Van den Ende^{9

10}, Kim Fligelstone¹¹, Agnes Kocher¹², Maddalena Larosa¹³, Martin Lau¹⁴, Alexandros Mitropoulos¹⁵, Mwidimi Ndosi¹⁶, Janet L Poole¹⁷, Anthony Redmond¹⁸, Valentin Ritschl^{19

20}, Helene Alexanderson^{21

22}, Yvonne Sjöberg²³, Gunilla von Perner²³, Till Uhlig²⁴, Cecilia Varju²⁵, Johanna E Vriezekolk⁹, Elisabet Welin²⁶, René Westhovens²⁷, Tanja A Stamm^{19

20}, Carina Boström^{22

28}

Affiliations

¹ Division of Rheumatology, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden ioannis.parodis@ki.se.
² Department of Gastroenterology, Dermatology and Rheumatology, Karolinska University Hospital, Stockholm, Sweden.
³ Department of Rheumatology, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.
⁴ Division of Rheumatology, Department of Medicine, University Hospital of Geneva, Geneve, Switzerland.
⁵ Faculty of Medicine, University of Geneva, Geneva, Switzerland.
⁶ Department of Rheumatology, Hôpitaux Universitaires de Strasbourg, Centre National de Référence (RESO), INSERM UMR-S 1109, Strasbourg, France.
⁷ Department of Rheumatology, University Hospital Zurich, University of Zurich, Zurich, Switzerland.
⁸ Department of Rheumatology, Faculty of Medicine, University of Debrecen, Debrecen, Hungary.
⁹ Department of Research, Sint Maartenskliniek, Nijmegen, The Netherlands.
¹⁰ Department of Rheumatology, Radboud University Medical Center, Nijmegen, The Netherlands.
¹¹ Federation of European Scleroderma Associations (FESCA), Brussels, Belgium.
¹² Institute of Nursing Science, Faculty of Medicine, University of Basel, Basel, Switzerland.
¹³ Rheumatology Unit, Department of Medical Specialties, ASL3, Genoa, Italy.
¹⁴ Arthritis Action, London, UK.
¹⁵ Department of Nursing and Midwifery, College of Health Wellbeing and Life Science, Sheffield Hallam University, Sheffield, UK.
¹⁶ School of Health and Social Wellbeing, University of the West of England, Bristol, UK.
¹⁷ Occupational Therapy Graduate Program, School of Medicine, University of New Mexico, Albuquerque, New Mexico, USA.
¹⁸ Leeds Institute for Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, UK.
¹⁹ Section for Outcomes Research, Center for Medical Statistics, Informatics and Intelligent Systems, Medical University of Vienna, Vienna, Austria.
²⁰ Ludwig Boltzmann Institute for Arthritis and Rehabilitation, Vienna, Austria.
²¹ Division of Rheumatology, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden.
²² Department of Occupational Therapy and Physiotherapy, Karolinska University Hospital, Stockholm, Sweden.
²³ Swedish Rheumatism Association, Stockholm, Sweden.
²⁴ Center for Treatment of Rheumatic and Musculoskeletal Diseases, Diakonhjemmet Hospital, Oslo, Norway.
²⁵ Department of Rheumatology and Immunology, Medical School of University of Pécs, Pécs, Hungary.
²⁶ School of Health Sciences, Örebro University, Örebro, Sweden.
²⁷ Skeletal Biology and Engineering Research Center, KU Leuven, Leuven, Belgium.
²⁸ Division of Physiotherapy, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.

PMID: 37433575
DOI: 10.1136/ard-2023-224416

Abstract

Objective: To develop evidence-based recommendations for the non-pharmacological management of systemic lupus erythematosus (SLE) and systemic sclerosis (SSc).

Methods: A task force comprising 7 rheumatologists, 15 other healthcare professionals and 3 patients was established. Following a systematic literature review performed to inform the recommendations, statements were formulated, discussed during online meetings and graded based on risk of bias assessment, level of evidence (LoE) and strength of recommendation (SoR; scale A-D, A comprising consistent LoE 1 studies, D comprising LoE 4 or inconsistent studies), following the European Alliance of Associations for Rheumatology standard operating procedure. Level of agreement (LoA; scale 0-10, 0 denoting complete disagreement, 10 denoting complete agreement) was determined for each statement through online voting.

Results: Four overarching principles and 12 recommendations were developed. These concerned common and disease-specific aspects of non-pharmacological management. SoR ranged from A to D. The mean LoA with the overarching principles and recommendations ranged from 8.4 to 9.7. Briefly, non-pharmacological management of SLE and SSc should be tailored, person-centred and participatory. It is not intended to preclude but rather complement pharmacotherapy. Patients should be offered education and support for physical exercise, smoking cessation and avoidance of cold exposure. Photoprotection and psychosocial interventions are important for SLE patients, while mouth and hand exercises are important in SSc.

Conclusions: The recommendations will guide healthcare professionals and patients towards a holistic and personalised management of SLE and SSc. Research and educational agendas were developed to address needs towards a higher evidence level, enhancement of clinician-patient communication and improved outcomes.

Keywords: Patient Care Team; Patient Reported Outcome Measures; Patient perspective; Systemic Lupus Erythematosus; Systemic Sclerosis.