Content of non-pharmacological care for systemic sclerosis and educational needs of European health professionals: a EUSHNet survey.
OBJECTIVE
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.
Department of Rheumatology, Sint Maartenskliniek, Nijmegen, The Netherlands. li.willems@maartenskliniek.nl.
Linda M
LM
Willems
Leeds Institute for Rheumatic and Musculoskeletal Medicine, University of Leeds; and NIHR Leeds Musculoskeletal Biomedical Research Unit, Leeds Teaching Hospital NHS Trust, Leeds, UK.
Anthony C
AC
Redmond
Department of Rheumatology, Medical University of Vienna, Vienna, Austria.
Tanja A
TA
Stamm
Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
Carina
C
Boström
Department of Internal Medicine, Faculty of Medicine and Health Sciences, Ghent University, Ghent, Belgium.
Saskia
S
Decuman
Federation of the European Scleroderma Associations (FESCA) aisbl., Tournai, Belgium.
Ann Tyrrell
AT
Kennedy
Private Practice of Physical Therapy, Zagreb, Croatia.
Jadranka
J
Brozd
Private Practice of Physical Therapy, Zagreb, Croatia.
Sanja
S
Roškar
Department of Internal Medicine, Faculty of Medicine and Health Sciences, Ghent University; and Department of Rheumatology, Ghent University Hospital, Ghent, Belgium.
Vanessa
V
Smith
Department of Orthopaedics, Leiden University Medical Center, Leiden, The Netherlands.
Theodora P M
TP
Vliet Vlieland
Department of Rheumatology, Sint Maartenskliniek, Nijmegen, The Netherlands.
Cornelia H M
CH
van den Ende
D004517:Education, Professional / Q000592:standards / Q000639:trends*; D005060:Europe; D019983:Guideline Adherence; D019538:Health Care Surveys; D006282:Health Personnel / Q000193:education* / Q000592:standards / Q000639:trends*; D054625:Healthcare Disparities / Q000592:standards / Q000639:trends*; D006801:Humans; D020407:Internet; D010348:Patient Care Team / Q000639:trends; D017410:Practice Guidelines as Topic; D010818:Practice Patterns, Physicians' / Q000592:standards / Q000639:trends*; D011379:Prognosis; D012017:Referral and Consultation; D012595:Scleroderma, Systemic / Q000175:diagnosis / Q000453:epidemiology / Q000628:therapy*; D011795:Surveys and Questionnaires