Opening the black box of non-pharmacological care in systemic sclerosis: a cross-sectional online survey of Dutch health professionals.
Cross sectional survey
Health professionals
Systemic sclerosis
Unmet care needs
Journal
Rheumatology international
ISSN: 1437-160X
Titre abrégé: Rheumatol Int
Pays: Germany
ID NLM: 8206885
Informations de publication
Date de publication:
Jul 2021
Jul 2021
Historique:
received:
01
10
2020
accepted:
13
11
2020
pubmed:
24
12
2020
medline:
12
1
2022
entrez:
23
12
2020
Statut:
ppublish
Résumé
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.
Identifiants
pubmed: 33355711
doi: 10.1007/s00296-020-04765-4
pii: 10.1007/s00296-020-04765-4
pmc: PMC8164617
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
1299-1310Subventions
Organisme : Nederlandse Organisatie voor Wetenschappelijk Onderzoek
ID : 023.006.043
Investigateurs
C W Y Appels
(CWY)
R Bakker
(R)
S Bazen
(S)
F Bender
(F)
H Berkers
(H)
A E van der Bijl
(AE)
E W F Blaas
(EWF)
F Bonte-Mineur
(F)
H Boerhof
(H)
G W M Boerrigter
(GWM)
R Bos
(R)
W J W Bos
(WJW)
C Bruggink
(C)
P D M de Buck
(PDM)
E van de Burgt
(E)
F S Catarinella
(FS)
S Denktaş
(S)
M Derksen
(M)
T Dhondai
(T)
M Eimers
(M)
R J Goekoop
(RJ)
E van Gorp
(E)
L D M Gossens
(LDM)
A Groenendaal-Boender
(A)
R van der Heijden
(R)
M J Herenius
(MJ)
J Hofman
(J)
J Huizer
(J)
M Hulsinga
(M)
B Jilderda
(B)
R Jonkers
(R)
S J de Jong
(SJ)
C G M Kallenberg
(CGM)
M A E de Kanter
(MAE)
M van Klei
(M)
H Knaapen-Hans
(H)
H Knaken
(H)
I Koopmans
(I)
P Krop
(P)
L Kwakkenbos
(L)
R Langenhuijsen
(R)
S Leroux
(S)
I C Lether
(IC)
M Limper
(M)
M Lohr
(M)
L van Mourik
(L)
D J Mulder
(DJ)
A Muns
(A)
S Otter
(S)
S Persijn
(S)
W F Peter
(WF)
J Potjewijd
(J)
B Rave
(B)
H de Ruiter
(H)
C G Schoemaker
(CG)
T H M Schoonbrood
(THM)
A A Schouffoer
(AA)
M Soeters
(M)
A J Stel
(AJ)
J Stöcker
(J)
Y K O Teng
(YKO)
E Ton
(E)
A van Veen
(A)
S Verhaar
(S)
P M J Verhoeven
(PMJ)
E Voogt
(E)
M Voortman
(M)
Y de Vries
(Y)
A E Voskuyl
(AE)
J E M Wijbrans-Roodbergen
(JEM)
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