Background EUSHNet aims to develop and disseminate non-pharmacological standards of care in patients with systemic sclerosis (SSc). However, to date there are no studies describing the current state of the art concerning non-pharmacological care in SSc that is provided in clinical practice.
Objectives To give a description of non-pharmacological care in SSc provided by European health professionals (HPs) in terms of referrals, treatment targets, and interventions.
Methods HPs working in SSc care across Europe were invited to complete an online survey through announcements by the EULAR Scleroderma Trials and Research Group (EUSTAR), the EULAR HP newsletter, the Federation of European Scleroderma Associations website, websites of national patient and HP associations, and by personal invitation. Several reminders were sent. The survey consisted of closed-ended questions about diversity of referring disciplines, treatment targets, and interventions used (69 interventions were listed with the opportunity to add interventions). An open-ended question was used to make an inventory of reasons for referral. Moreover, reasons for referral were linked to the International Classification of Functioning, Disability and Health (ICF). Questions about clinical practice were restricted to HPs who treated more than two patients with SSc last year.
Results In total, 52 HPs, from 13 different European countries and 7 different disciplines, completed the questions regarding clinical practice. 80% of responding HPs treated more than 7 patients each in the past year and most HPs worked in a hospital (89%). Referrals were most frequently received from the rheumatologist. Of the 155 reported reasons for referral, the most common reasons were problems with the skin (n=16), carrying out daily routine tasks (n=13), joints and bones (n=11), and Raynaud's phenomenon (n=10). Most common treatment targets in the care for patients with SSc mentioned by >70% of HPs were pain (89%), stiffness (77%), household activities (73%), and climate and coldness (73%). In total, 105 different interventions were mentioned of which 34 were named by the majority of HPs within at least one discipline. Of these, 10 interventions were mentioned by at least two disciplines. Advice about physical activity (n=31), life style advice (n=29), training of the hand (n=28), and assessment of body functions (n=28) were the four most provided interventions in most/all patients with SSc. The intervention self-management was used by four disciplines.
Conclusions Results suggest that non-pharmacological care in SSc is very heterogeneous with respect to content and type of HPs providing non-pharmacological care. The efforts made in recruiting HPs and the low number of participants in this survey suggest that the number of HPs with specific expertise in the treatment of SSc is limited. An international network that bundles the existing expertise and aims to establish standards of care could probably improve the quality of care for patients with SSc.
Disclosure of Interest None declared