Systemic sclerosis: state of the art on clinical practice guidelines

被引：119

作者：

Smith, Vanessa ^{[1
,2
]}

Scire, Carlo Alberto ^{[3
,4
]}

Talarico, Rosaria ^{[5
]}

Airo, Paolo ^{[6
]}

Alexander, Tobias ^{[7
,8
]}

Allanore, Yannick ^{[9
,10
]}

Bruni, Cosimo ^{[11
,12
,13
]}

Codullo, Veronica ^{[14
,15
]}

Dalm, Virgil ^{[16
,17
]}

De Vries-Bouwstra, Jeska ^{[18
]}

Della Rossa, Alessandra ^{[5
]}

Distler, Oliver ^{[19
]}

Galetti, Ilaria ^{[20
]}

Launay, David ^{[21
,22
]}

Lepri, Gemma ^{[11
,12
,13
]}

Mathian, Alexis ^{[23
]}

Mouthon, Luc ^{[9
,10
]}

Ruaro, Barbara ^{[24
,25
]}

Sulli, Alberto ^{[24
,25
]}

Tincani, Angela ^{[6
]}

Vandecasteele, Els ^{[2
,26
]}

Vanhaecke, Amber ^{[1
,2
]}

Vanthuyne, Marie ^{[27
,28
]}

Van den Hoogen, Frank ^{[29
,30
]}

Van Vollenhoven, Ronald ^{[31
]}

Voskuyl, Alexandre E. ^{[32
,33
]}

Zanatta, Elisabetta ^{[34
]}

Bombardieri, Stefano ^{[5
]}

Burmester, Gerd ^{[35
]}

Eurico, Fonseca Joao ^{[36
,37
]}

Frank, Charissa ^{[38
]}

Hachulla, Eric ^{[21
,22
]}

Houssiau, Frederic ^{[27
,28
]}

Mueller-Ladner, Ulf ^{[39
]}

Schneider, Matthias ^{[40
]}

van Laar, Jacob M. ^{[41
]}

Vieira, Ana ^{[42
]}

Cutolo, Maurizio ^{[24
,25
]}

Mosca, Marta ^{[43
]}

Matucci-Cerinic, Marco ^{[11
,12
,13
]}

机构：

[1] Ghent Univ Hosp, Dept Rheumatol, Ghent, Belgium

[2] Univ Ghent, Dept Internal Med, Ghent, Belgium

[3] Univ Ferrara, Dept Med Sci, Sect Rheumatol, Ferrara, Italy

[4] Italian Soc Rheumatol SIR, Epidemiol Unit, Milan, Italy

[5] Univ Pisa, Dept Clin & Expt Med, Rheumatol Unit, Pisa, Italy

[6] Azienda Osped Spedali Civili Brescia, Rheumatol & Clin Immunol Unit, Brescia, Italy

[7] Charite, Dept Rheumatol, Berlin, Germany

[8] Charite, Clin Immunol Unit, Berlin, Germany

[9] Univ Paris 05, Serv Med Interne, Paris, France

[10] Hop Cochin, AP HP, Ctr Reference Malad Syst Autoimmunes Rares France, Paris, France

[11] Univ Florence, Dept Clin & Expt Med, Florence, Italy

[12] AOU Careggi, Div Rheumatol, Florence, Italy

[13] AOU Careggi, Scleroderma Unit, Florence, Italy

[14] Univ Pavia, Dept Rheumatol, Pavia, Italy

[15] IRCCS Policlin San Matteo, Dept Rheumatol, Pavia, Italy

[16] Erasmus MC, Dept Internal Med, Rotterdam, Netherlands

[17] Erasmus MC, Dept Immunol, Rotterdam, Netherlands

[18] Leiden Univ, Dept Rheumatol, Med Ctr, Leiden, Netherlands

[19] Univ Hosp Zurich, Dept Rheumatol, Zurich, Switzerland

[20] Federat European Scleroderma Assoc FESCA, Brussels, Belgium

[21] Univ Lille, Depnt Med Interne & Immunol Clin, Lille, France

[22] CHU Lille, Ctr Reference Malad Syst & Autoimmunes Rares Nord, LIRIC, INSERM, Lille, France

[23] Hosp Pitie Salpetriere, Dept Internal Med, Paris, France

[24] Univ Genoa, IRCCS San Martino Polyclin Hosp, Res Lab, Genoa, Italy

[25] Univ Genoa, IRCCS San Martino Polyclin Hosp, Acad Div Clin Rheumatol, Dept Internal Med, Genoa, Italy

[26] Ghent Univ Hosp, Dept Cardiol, Ghent, Belgium

[27] Catholic Univ Louvain, Dept Rheumatol, Louvain La Neuve, Belgium

[28] Clin Univ St Luc, Dept Rheumatol, Louvain La Neuve, Belgium

[29] Radboud Univ Nijmegen, Med Ctr Nijmegen, Dept Rheumatol, Nijmegen, Netherlands

[30] Sint Maartensklin, Dept Rheumatol, Nijmegen, Netherlands

[31] Univ Amsterdam, Acad Med Ctr, Clin Immunol & Rheumatol, Amsterdam Rheumatol & Immunol Ctr, Amsterdam, Netherlands

[32] Amsterdam UMC, Dept Rheumatol, Amsterdam, Netherlands

[33] Vrije Univ Amsterdam, Amsterdam Infect & Immun Inst, Amsterdam, Netherlands

[34] Univ Padua, Dept Med, Div Rheumatol, Padua, Italy

[35] Charite, Dept Rheumatol & Clin Immunol, Berlin, Germany

[36] Ctr Hosp Lisboa Norte, Hosp Santa Maria, Dept Rheumatol, Lisbon, Portugal

[37] Univ Lisbon, Fac Med, Inst Med Mol, Lisbon, Portugal

[38] Flemish Patient Org Hereditary Collagen Disorders, Koersel, Belgium

[39] Justus Liebig Univ Giessen, Dept Rheumatol & Clin Immunol, Kerckhoff Klin, Giessen, Germany

[40] Heinrich Heine Univ Dusseldorf, Med Fac, Inst Rheumatol, Hiller Res Unit Rheumatol, Dusseldorf, Germany

[41] Univ Med Ctr Utrecht, Dept Rheumatol & Clin Immunol, Utrecht, Netherlands

[42] LPCDR, Portuguese League Rheumat Dis, Lisbon, Portugal

[43] Univ Pisa, Dept Internal Med, Rheumatol Unit, Pisa, Italy

来源：

RMD OPEN | 2018年 / 4卷

关键词：

SIMPLE CAPILLAROSCOPIC DEFINITIONS; STEM-CELL TRANSPLANTATION; INTERSTITIAL LUNG-DISEASE; PRACTICE PATHWAY; FUNCTIONAL DISABILITY; DEVELOPING CRITERIA; EXPERT CONSENSUS; SKIN ULCERS; POINTS; RECOMMENDATIONS;

D O I：

10.1136/rmdopen-2018-000782

中图分类号：

R5 [内科学];

学科分类号：

1002 ; 100201 ;

摘要：

Systemic sclerosis (SSc) is an orphan disease characterised by autoimmunity, fibrosis of the skin and internal organs, and vasculopathy. SSc may be associated with high morbidity and mortality. In this narrative review we summarise the results of a systematic literature research, which was performed as part of the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases project, aimed at evaluating existing clinical practice guidelines or recommendations. Only in the domains 'Vascular & Ulcers' (ie, non-pharmacological approach to digital ulcer), 'PAH' (ie, screening and treatment), 'Treatment' and 'Juveniles' (ie, evaluation of juveniles with Raynaud's phenomenon) evidence-based and consensus-based guidelines could be included. Hence there is a preponderance of unmet needs in SSc referring to the diagnosis and (non-) pharmacological treatment of several SSc-specific complications. Patients with SSc experience significant uncertainty concerning SSc-related taxonomy, management (both pharmacological and non-pharmacological) and education. Day-to-day impact of the disease (loss of self-esteem, fatigue, sexual dysfunction, and occupational, nutritional and relational problems) is underestimated and needs evaluation.

引用

页数：9

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