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Opening the black box of non-pharmacological care in systemic sclerosis: a cross-sectional online survey of Dutch health professionals.

Authors
  • Stöcker, Juliane K1, 2, 3
  • Vonk, Madelon C4
  • van den Hoogen, Frank H J5, 4
  • Nijhuis-van der Sanden, Maria W G6
  • Spierings, Julia7
  • Staal, J Bart8, 6
  • Satink, Ton9, 10
  • van den Ende, Cornelia H M5, 4
  • 1 Department of Rheumatology, Sint Maartenskliniek, P.O. Box 9011, 6500 GM, Nijmegen, The Netherlands. [email protected] , (Netherlands)
  • 2 Musculoskeletal Rehabilitation Research Group, HAN University of Applied Sciences, Nijmegen, The Netherlands. [email protected] , (Netherlands)
  • 3 Department of Rheumatology, Radboud University Medical Center, Nijmegen, The Netherlands. [email protected] , (Netherlands)
  • 4 Department of Rheumatology, Radboud University Medical Center, Nijmegen, The Netherlands. , (Netherlands)
  • 5 Department of Rheumatology, Sint Maartenskliniek, P.O. Box 9011, 6500 GM, Nijmegen, The Netherlands. , (Netherlands)
  • 6 Radboud Institute for Health Sciences, IQ Healthcare, Radboud University Medical Center, Nijmegen, The Netherlands. , (Netherlands)
  • 7 Department of Rheumatology and Clinical Immunology, University Medical Center Utrecht, Utrecht, The Netherlands. , (Netherlands)
  • 8 Musculoskeletal Rehabilitation Research Group, HAN University of Applied Sciences, Nijmegen, The Netherlands. , (Netherlands)
  • 9 Research Group Neuro Rehabilitation, HAN University of Applied Sciences, Nijmegen, The Netherlands. , (Netherlands)
  • 10 European Masters of Science in Occupational Therapy, Amsterdam, The Netherlands. , (Netherlands)
Type
Published Article
Journal
Rheumatology International
Publisher
Springer-Verlag
Publication Date
Jul 01, 2021
Volume
41
Issue
7
Pages
1299–1310
Identifiers
DOI: 10.1007/s00296-020-04765-4
PMID: 33355711
Source
Medline
Keywords
Language
English
License
Unknown

Abstract

The objective is to describe the spectrum of the health professional (HP) treatment approach for systemic sclerosis (SSc) from the perspective of Dutch HPs, including alignment of treatment goals set by HPs with self-reported referral reasons, coverage of patient-reported unmet care needs, and quality of communication between HPs and rheumatologists. Dutch HPs were invited through their patients with SSc to complete an anonymous online survey. The survey covered referral reasons, treatment goals, and interventions of the last patient treated, as well as the perceived quality of communication between HPs and rheumatologists. Referral reasons and treatment targets were linked to the International Classification of Functioning, Disability and Health following the refined ICF Linking Rules. Seventy-nine HPs from 8 professions (including 58 physiotherapists, 73%) completed the survey. One hundred and thirty-three different referral reasons were reported, yielding 58 different ICF codes, with 41 (70.7%) being linked to the ICF domain "body structures and functions." The reported interventions focused on body functions/structures (27.9%), training of daily activities (25.6%), education and advice (26.3%), and psychosocial interventions (20.2%). The quality of communication between HPs and rheumatologists was perceived as low. Our findings revealed numerous treatment options offered by Dutch HPs addressing the unmet care needs of patients with SSc. There is an overlap in the content of the various HP disciplines, and HP treatment goals are not sufficiently aligned with referrals of rheumatologists. HP treatment offer seemed inefficiently organized, possibly precluding rheumatologists from making targeted referrals. Communication between rheumatologists and HPs should be improved.

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