Linda M Willems1, Anthony C Redmond2, Tanja A Stamm3, Carina Boström4, Saskia Decuman5, Ann Tyrrell Kennedy6, Jadranka Brozd7, Sanja Roškar7, Vanessa Smith8, Theodora P M Vliet Vlieland9, Cornelia H M van den Ende10. 1. Department of Rheumatology, Sint Maartenskliniek, Nijmegen, The Netherlands. li.willems@maartenskliniek.nl. 2. Leeds Institute for Rheumatic and Musculoskeletal Medicine, University of Leeds; and NIHR Leeds Musculoskeletal Biomedical Research Unit, Leeds Teaching Hospital NHS Trust, Leeds, UK. 3. Department of Rheumatology, Medical University of Vienna, Vienna, Austria. 4. Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden. 5. Department of Internal Medicine, Faculty of Medicine and Health Sciences, Ghent University, Ghent, Belgium. 6. Federation of the European Scleroderma Associations (FESCA) aisbl., Tournai, Belgium. 7. Private Practice of Physical Therapy, Zagreb, Croatia. 8. Department of Internal Medicine, Faculty of Medicine and Health Sciences, Ghent University; and Department of Rheumatology, Ghent University Hospital, Ghent, Belgium. 9. Department of Orthopaedics, Leiden University Medical Center, Leiden, The Netherlands. 10. Department of Rheumatology, Sint Maartenskliniek, Nijmegen, The Netherlands.
Abstract
OBJECTIVES: To describe the non-pharmacological care in systemic sclerosis (SSc) provided by European health professionals (HPs) including referrals, treatment targets, interventions, and educational needs. METHODS: In this observational study, European HPs working in SSc care were invited to complete an online survey through announcements by EUSTAR (European League Against Rheumatism (EULAR) Scleroderma Trials and Research) and FESCA (Federation of European Scleroderma Associations), the EULAR HPs' newsletter, websites of national patient and HP associations, and by personal invitation. RESULTS: In total, 56 HPs, from 14 different European countries and 7 different disciplines, responded to the survey. A total of 133 specific indications for referral were reported, 72% of which could be linked to the International Classification of Functioning, Disability and Health domain "body functions and structures". Of the 681 reported treatment targets 45% was related to "body functions and structures". In total, 105 different interventions were reported as being used to address these treatment targets. Almost all (98%) respondents reported having educational needs, with the topics of management of stiffness (67%), pain (60%), and impaired hand function (56%) being mentioned most frequently. CONCLUSIONS: Non-pharmacological care in SSc varies in Europe with respect to the content of interventions, reasons for referral, and treatment targets. Reasons for referral to HPs are not well-aligned to HPs subsequent treatment targets in SSc care suggesting suboptimal communication between physicians and HPs. The wide variations reported indicate a need to consolidate geographically disparate expertise within countries and to develop and improve standards of non-pharmacological care in SSc.
OBJECTIVES: To describe the non-pharmacological care in systemic sclerosis (SSc) provided by European health professionals (HPs) including referrals, treatment targets, interventions, and educational needs. METHODS: In this observational study, European HPs working in SSc care were invited to complete an online survey through announcements by EUSTAR (European League Against Rheumatism (EULAR) Scleroderma Trials and Research) and FESCA (Federation of European Scleroderma Associations), the EULAR HPs' newsletter, websites of national patient and HP associations, and by personal invitation. RESULTS: In total, 56 HPs, from 14 different European countries and 7 different disciplines, responded to the survey. A total of 133 specific indications for referral were reported, 72% of which could be linked to the International Classification of Functioning, Disability and Health domain "body functions and structures". Of the 681 reported treatment targets 45% was related to "body functions and structures". In total, 105 different interventions were reported as being used to address these treatment targets. Almost all (98%) respondents reported having educational needs, with the topics of management of stiffness (67%), pain (60%), and impaired hand function (56%) being mentioned most frequently. CONCLUSIONS: Non-pharmacological care in SSc varies in Europe with respect to the content of interventions, reasons for referral, and treatment targets. Reasons for referral to HPs are not well-aligned to HPs subsequent treatment targets in SSc care suggesting suboptimal communication between physicians and HPs. The wide variations reported indicate a need to consolidate geographically disparate expertise within countries and to develop and improve standards of non-pharmacological care in SSc.
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