TY - JOUR
T1 - Requirements for systemic sclerosis expert centres in the Netherlands
T2 - A Delphi consensus study
AU - Spierings, Julia
AU - Schriemer, Rita
AU - Dittmar, Sonja
AU - de Pundert, Lian
AU - de Vries-Bouwstra, Jeska
AU - van den Ende, Els
AU - Vonk, Madelon
N1 - Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This work was supported by the Arthritis Research and Collaboration Hub (ARCH) foundation.
Funding Information:
The authors would like to acknowledge the Dutch Arthritis Foundation (ReumaNederland) for funding the ARCH initiative. Furthermore, they thank the Dutch patient organization (NVLE) for their efforts with regard to the patient panel session.
Publisher Copyright:
© The Author(s) 2020.
PY - 2021/2/1
Y1 - 2021/2/1
N2 - Introduction: Systemic sclerosis is a rare and complex disease. Optimal management of patients requires knowledge and experience and, importantly, intensive collaboration between hospitals and multidisciplinary teams. Definition and recognition of expert centres in systemic sclerosis is currently lacking, which complicates collaboration between centres and leaves patients poorly informed. The aim of this study was to develop a set of requirements for two types of systemic sclerosis centres in order to establish a nationwide structure for an optimal and transparent organization of care. Methods: A three-round Delphi study was conducted among a panel of rheumatologists working at university or regional hospitals across the Netherlands. Prior to the final consensus round, a session with a patient panel (N = 22) was held. The results of this meeting were described in the last round for rheumatologists. Criteria were divided into five categories: (1) medical care, (2) case load, (3) collaboration, (4) research, (5) training of staff, and (6) other. In the first round, criteria derived from literature were proposed and participants could add criteria that were missing. For every item, participants could indicate if they thought the item should be included for two types of systemic sclerosis centres: (1) systemic sclerosis expert centre or (2) systemic sclerosis treatment centres. Consensus was reached when more than 85% of the panel agreed. Results: In total, 47 rheumatologists participated in Delphi round 1, 35 in round 2 and 43 in round 3. Additional suggestions were added by the patient panel (n = 22). Consensus was reached for the requirements of systemic sclerosis expert centres (45 items) and systemic sclerosis treatment centres (29 items) including minimal caseloads of annual suspected systemic sclerosis cases and total patients in care. Conclusion: Requirements of centres for systemic sclerosis care in the Netherlands were established in this study. Feasibility of certification should be evaluated next. Our proposed list can serve as a model for other countries.
AB - Introduction: Systemic sclerosis is a rare and complex disease. Optimal management of patients requires knowledge and experience and, importantly, intensive collaboration between hospitals and multidisciplinary teams. Definition and recognition of expert centres in systemic sclerosis is currently lacking, which complicates collaboration between centres and leaves patients poorly informed. The aim of this study was to develop a set of requirements for two types of systemic sclerosis centres in order to establish a nationwide structure for an optimal and transparent organization of care. Methods: A three-round Delphi study was conducted among a panel of rheumatologists working at university or regional hospitals across the Netherlands. Prior to the final consensus round, a session with a patient panel (N = 22) was held. The results of this meeting were described in the last round for rheumatologists. Criteria were divided into five categories: (1) medical care, (2) case load, (3) collaboration, (4) research, (5) training of staff, and (6) other. In the first round, criteria derived from literature were proposed and participants could add criteria that were missing. For every item, participants could indicate if they thought the item should be included for two types of systemic sclerosis centres: (1) systemic sclerosis expert centre or (2) systemic sclerosis treatment centres. Consensus was reached when more than 85% of the panel agreed. Results: In total, 47 rheumatologists participated in Delphi round 1, 35 in round 2 and 43 in round 3. Additional suggestions were added by the patient panel (n = 22). Consensus was reached for the requirements of systemic sclerosis expert centres (45 items) and systemic sclerosis treatment centres (29 items) including minimal caseloads of annual suspected systemic sclerosis cases and total patients in care. Conclusion: Requirements of centres for systemic sclerosis care in the Netherlands were established in this study. Feasibility of certification should be evaluated next. Our proposed list can serve as a model for other countries.
KW - criteria
KW - Delphi consensus study
KW - organizational structure
KW - quality of care
KW - Systemic sclerosis
UR - http://www.scopus.com/inward/record.url?scp=85090591609&partnerID=8YFLogxK
U2 - 10.1177/2397198320953063
DO - 10.1177/2397198320953063
M3 - Article
AN - SCOPUS:85090591609
SN - 2397-1983
VL - 6
SP - 96
EP - 101
JO - Journal of Scleroderma and Related Disorders
JF - Journal of Scleroderma and Related Disorders
IS - 1
ER -