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OP0100-HPR Educational Needs Among Health Professionals Working with Systemic Sclerosis: An International Survey Conducted on Behalf of the Eular Scleroderma Health Professionals Network (EUSHNet)
  1. L. M. Willems1,
  2. A. C. Redmond2,
  3. F. Braschi3,
  4. T. A. Stamm4,
  5. C. Boström5,
  6. S. Decuman6,
  7. A. Tyrrell Kennedy7,
  8. J. Brozd8,
  9. S. Roškar8,
  10. V. Smith9,
  11. C. H. van den Ende1
  1. 1Department of Rheumatology, Sint Maartenskliniek, Nijmegen, Netherlands
  2. 2Devision of Rheumatology, University of Leeds and NIHR Leeds Musculoskeletal Biomedical Research Unit, Leeds, United Kingdom
  3. 3Department of Biomedicine, Scleroderma Ulcer Care Unit, Devision of Rheumatology, University of Florence, Florence, Italy
  4. 4Department of Rheumatology, Medical University of Vienna, Vienna, Austria
  5. 5Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden
  6. 6Department of Internal Medicine, Faculty of Medicine and Health Sciences, Ghent University, Ghent
  7. 7Federation of the European Scleroderma Associations (FESCA) aisbl., Tournai, Belgium
  8. 8Private Practice of Physical Therapy / Croatian Society of Patients with Scleroderma, Zagreb, Croatia
  9. 9Department of Rheumatology, Ghent University Hospital, Ghent, Belgium


Background Due to the rarity and complexity of systemic sclerosis (SSc), expertise among health care providers on the available and effective treatment modalities for people with SSc is fragmented. The overarching aim of the EUSHNet project is to improve non-pharmacological care and reduce inequity through an international network of health professionals (HPs) working in SSc.

Objectives To identify educational needs as perceived by European HPs working with people with SSc.

Methods HPs working in SSc care across Europe were invited to complete an online survey through announcements by the EULAR HP newsletter, the FESCA website, EUSTAR centres, websites of national patient and HP associations, and by personal invitation. The survey asked HPs about received referrals, assessments and interventions used, current and future research projects, and perceived educational needs.

Results In total, 60 HPs, from 14 different European countries and 7 different disciplines, completed the section of the questionnaire concerning educational needs. 87% of the HPs reported being experienced in clinical patient care or rehabilitation of people with SSc, and 28% had participated in post-graduate specialized training, education or course about SSc. Further, educational needs were reported by 59 (98%) HPs, and 20% reported that they were not sure whether their knowledge of current research evidence was up to date. A median of 6.5 areas of educational need were reported with further information about helping patients manage stiffness, pain, hand function, fatigue, and emotional problems cited as the most frequently mentioned areas (Table 1). The preferred mode of education delivery was reported to be a combination of internet/e-learning (73%), face-to-face sessions during conferences (62%), and written material (57%). Language barriers in the delivery of education were foreseen by about one third of the HPs in 10 countries.

Conclusions Our results suggest that HPs would like to further develop their expertise regarding SSc care. To address these needs, educational courses and/or training should be developed and ways found to provide consistent education to all European HPs working in SSc.

Disclosure of Interest None Declared

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