PERFORMANCE OF THE EULAR SYSTEMIC SCLEROSIS IMPACT OF DISEASE (SCLEROID) QUESTIONNAIRE AS A PATIENT REPORTED OUTCOME MEASURE FOR PATIENTS WITH DIFFUSE SYSTEMIC SCLEROSIS

被引:0
|
作者
Dobrota, R. [1 ]
Garaiman, A.
Fligelstone, K. [2 ]
Kennedy, A. [3 ]
Roennow, A. [4 ]
Allanore, Y. [5 ,6 ]
Carreira, P. [7 ]
Czirjak, L. [8 ]
Denton, C. P.
Hesselstrand, R. [9 ]
Sandqvist, G. [10 ]
Kowal-Bielecka, O. [11 ]
Bruni, C. [12 ]
Cerinic, M. Matucci [12 ]
Mihai, C. [13 ]
Gheorghiu, A. M. [13 ]
Mueller-Ladner, U. [14 ]
Sexton, J.
Kvien, T. K. [15 ]
Heiberg, T. [16 ]
Distler, O. [1 ]
Becker, M. O. [1 ]
机构
[1] Univ Hosp Zurich, Dept Rheumatol, Zurich, Switzerland
[2] Federat European Scleroderma Associat FESCA, London, England
[3] Federat European Scleroderma Associat FESCA, Tournai, Belgium
[4] Federat European Scleroderma Associat FESCA, St Maur, Belgium
[5] Univ Paris 05, Paris, France
[6] Cochin Hosp, Dept Rheumatol, Paris, France
[7] Hosp Univ 12 Octubre, Dept Rheumatol, Madrid, Spain
[8] Univ Pecs, Med Sch, Dept Immunol & Rheumatol, Pecs, Hungary
[9] UCL, Ctr Rheumatol, Royal Free Campus, London, England
[10] Lund Univ, Dept Rheumatol, Lund, Sweden
[11] Med Univ Bialystok, Dept Rheumatol & Internal Med, Bialystok, Poland
[12] Univ Florence, Careggi Univ Hosp, Div Rheumatol, Dept Expt & Clin Med, Florence, Italy
[13] Carol Davila Univ Med & Pharm, Cantacuzino Hosp, Dept Rheumatol & Internal Med, Bucharest, Romania
[14] Justus Liebig Univ Giessen, Dept Rheumatol & Clin Immunol, Campus Kerckhoff, Bad Nauheim, Germany
[15] Diakonhjemmet Hosp, Div Rheumatol & Res, Oslo, Norway
[16] Oslo Univ Hosp, Reg Res Support, Oslo, Norway
关键词
Patient-led research; Patient reported outcomes; Systemic sclerosis;
D O I
10.1136/annrheumdis-2023-eular.5060
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
POS0342
引用
收藏
页码:418 / 419
页数:2
相关论文
共 50 条
  • [21] Patient participation in patient-reported outcome instrument development in systemic sclerosis
    Pauling, J. D.
    Frech, T. M.
    Domsic, R. T.
    Hudson, M.
    CLINICAL AND EXPERIMENTAL RHEUMATOLOGY, 2017, 35 (04) : S184 - S192
  • [22] Patient-reported outcome instruments in clinical trials of systemic sclerosis
    Pauling, John D.
    Caetano, Joana
    Campochiaro, Corrado
    De Luca, Giacomo
    Gheorghiu, Ana Maria
    Lazzaroni, Maria Grazia
    Khanna, Dinesh
    JOURNAL OF SCLERODERMA AND RELATED DISORDERS, 2020, 5 (02) : 90 - 102
  • [23] DAVIX: a vascular outcome measure in systemic sclerosis
    Kapoor, Puneet
    Chung, Lorinda
    LANCET RHEUMATOLOGY, 2023, 5 (10): : E569 - E570
  • [24] The critical need for patient-reported outcome measures to assess the severity and impact of systemic sclerosis
    Hughes, M.
    Denton, C. P.
    BRITISH JOURNAL OF DERMATOLOGY, 2022, 186 (01) : 11 - 12
  • [25] A rare disease patient-reported outcome measure: revision and validation of the German version of the Systemic Sclerosis Quality of Life Questionnaire (SScQoL) using the Rasch model
    Agnes Kocher
    Mwidimi Ndosi
    Kris Denhaerynck
    Michael Simon
    Andrew A. Dwyer
    Oliver Distler
    Kirsten Hoeper
    Patrizia Künzler-Heule
    Anthony C. Redmond
    Peter M. Villiger
    Ulrich A. Walker
    Dunja Nicca
    Orphanet Journal of Rare Diseases, 16
  • [26] A rare disease patient-reported outcome measure: revision and validation of the German version of the Systemic Sclerosis Quality of Life Questionnaire (SScQoL) using the Rasch model
    Kocher, Agnes
    Ndosi, Mwidimi
    Denhaerynck, Kris
    Simon, Michael
    Dwyer, Andrew A.
    Distler, Oliver
    Hoeper, Kirsten
    Kuenzler-Heule, Patrizia
    Redmond, Anthony C.
    Villiger, Peter M.
    Walker, Ulrich A.
    Nicca, Dunja
    ORPHANET JOURNAL OF RARE DISEASES, 2021, 16 (01)
  • [27] Validity of the Swedish version of the systemic sclerosis quality of life questionnaire (SSCQoL): A novel measure of quality of life for patients with systemic sclerosis
    Sandqvist, Gunnel
    Hesselstrand, Roger
    ANNALS OF THE RHEUMATIC DISEASES, 2019, 78 (06) : 855 - +
  • [28] Lenabasum for Skin Disease in Patients With Diffuse Cutaneous Systemic Sclerosis
    Hinchcliff, Monique
    ARTHRITIS & RHEUMATOLOGY, 2020, 72 (08) : 1237 - 1240
  • [29] Prospective Validation of the Scleroderma Skin Patient-Reported Outcome (SSPRO) in Diffuse Cutaneous Systemic Sclerosis (dcSSc)
    Man, Ada
    Dgetluck, Nancy
    White, Barbara
    JOURNAL OF RHEUMATOLOGY, 2018, 45 (07) : 1049 - 1050
  • [30] PATIENT PERCEPTION OF DISEASE BURDEN IN DIFFUSE CUTANEOUS SYSTEMIC SCLEROSIS (DCSSC)
    Khanna, D.
    Allanore, Y.
    Denton, C.
    Matucci-Cerinic, M.
    Pope, J.
    Hinzmann, B.
    Briody, S.
    Pena, J. de Oliveira
    Distler, O.
    ANNALS OF THE RHEUMATIC DISEASES, 2016, 75 : 532 - 533