EULAR recommendations for the non-pharmacological management of systemic lupus erythematosus and systemic sclerosis

被引:23
|
作者
Parodis, Ioannis [1 ,2 ,3 ]
Girard-Guyonvarc'h, Charlotte [4 ,5 ]
Arnaud, Laurent [6 ]
Distler, Oliver [7 ]
Domjan, Andrea [8 ]
Van den Ende, Cornelia H. M. [9 ,10 ]
Fligelstone, Kim [11 ]
Kocher, Agnes [12 ]
Larosa, Maddalena [13 ]
Lau, Martin [14 ]
Mitropoulos, Alexandros [15 ]
Ndosi, Mwidimi [16 ]
Poole, Janet L. [17 ]
Redmond, Anthony [18 ]
Ritschl, Valentin [19 ,20 ]
Alexanderson, Helene [1 ,21 ]
Sjoberg, Yvonne [22 ]
von Perner, Gunilla [22 ]
Uhlig, Till [23 ]
Varju, Cecilia [24 ]
Vriezekolk, Johanna E. [9 ]
Welin, Elisabet [25 ]
Westhovens, Rene [26 ]
Stamm, Tanja A. [19 ,20 ]
Bostrom, Carina [21 ,27 ]
机构
[1] Karolinska Inst, Dept Med Solna, Div Rheumatol, S-17176 Stockholm, Sweden
[2] Karolinska Univ Hosp, Dept Gastroenterol Dermatol & Rheumatol, Stockholm, Sweden
[3] Orebro Univ, Fac Med & Hlth, Dept Rheumatol, Orebro, Sweden
[4] Univ Hosp Geneva, Dept Med, Div Rheumatol, Geneva, Switzerland
[5] Univ Geneva, Fac Med, Geneva, Switzerland
[6] Hop Univ Strasbourg, Ctr Natl Reference RESO, Dept Rheumatol, INSERM UMR S 1109, S 1109, Strasbourg, France
[7] Univ Zurich, Univ Hosp Zurich, Dept Rheumatol, Zurich, Switzerland
[8] Univ Debrecen, Fac Med, Dept Rheumatol, Debrecen, Hungary
[9] Sint Maartensklin, Dept Res, Nijmegen, Netherlands
[10] Radboud Univ Nijmegen, Dept Rheumatol, Med Ctr, Nijmegen, Netherlands
[11] Federat European Scleroderma Assoc FESCA, Brussels, Belgium
[12] Univ Basel, Inst Nursing Sci, Fac Med, Basel, Switzerland
[13] ASL3, Rheumatol Unit, Dept Med Specialties, Genoa, Italy
[14] Arthrit Act, London, England
[15] Sheffield Hallam Univ, Coll Hlth Wellbeing & Life Sci, Dept Nursing & Midwifery, Sheffield, England
[16] Univ West England, Sch Hlth & Social Wellbeing, Bristol, England
[17] Univ New Mexico, Sch Med, Occupat Therapy Grad Program, Albuquerque, NM USA
[18] Univ Leeds, Leeds Inst Rheumat & Musculoskeletal Med, Leeds, England
[19] Med Univ Vienna, Ctr Med Stat Informat & Intelligent Syst, Sect Outcomes Res, Vienna, Austria
[20] Ludwig Boltzmann Inst Arthrit & Rehabil, Vienna, Austria
[21] Karolinska Univ Hosp, Dept Occupat Therapy & Physiotherapy, Stockholm, Sweden
[22] Swedish Rheumatism Assoc, Stockholm, Sweden
[23] Diakonhjemmet Hosp, Ctr Treatment Rheumat & Musculoskeletal Dis, Oslo, Norway
[24] Univ Pecs, Dept Rheumatol & Immunol, Med Sch, Pecs, Hungary
[25] Orebro Univ, Sch Hlth Sci, Orebro, Sweden
[26] Katholieke Univ Leuven, Skeletal Biol & Engn Res Ctr, Leuven, Belgium
[27] Karolinska Inst, Div Physiotherapy, Dept Neurobiol Care Sci & Soc, Stockholm, Sweden
关键词
Systemic Lupus Erythematosus; Systemic Sclerosis; Patient perspective; Patient Reported Outcome Measures; Patient Care Team; QUALITY-OF-LIFE; PHYSICAL-ACTIVITY; HAND FUNCTION; PATIENT EDUCATION; CIGARETTE-SMOKING; EXERCISE PROGRAM; DIGITAL ULCERS; EFFICACY; THERAPY; PILOT;
D O I
10.1136/ard-2023-224416
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
ObjectiveTo develop evidence-based recommendations for the non-pharmacological management of systemic lupus erythematosus (SLE) and systemic sclerosis (SSc). MethodsA task force comprising 7 rheumatologists, 15 other healthcare professionals and 3 patients was established. Following a systematic literature review performed to inform the recommendations, statements were formulated, discussed during online meetings and graded based on risk of bias assessment, level of evidence (LoE) and strength of recommendation (SoR; scale A-D, A comprising consistent LoE 1 studies, D comprising LoE 4 or inconsistent studies), following the European Alliance of Associations for Rheumatology standard operating procedure. Level of agreement (LoA; scale 0-10, 0 denoting complete disagreement, 10 denoting complete agreement) was determined for each statement through online voting. ResultsFour overarching principles and 12 recommendations were developed. These concerned common and disease-specific aspects of non-pharmacological management. SoR ranged from A to D. The mean LoA with the overarching principles and recommendations ranged from 8.4 to 9.7. Briefly, non-pharmacological management of SLE and SSc should be tailored, person-centred and participatory. It is not intended to preclude but rather complement pharmacotherapy. Patients should be offered education and support for physical exercise, smoking cessation and avoidance of cold exposure. Photoprotection and psychosocial interventions are important for SLE patients, while mouth and hand exercises are important in SSc. ConclusionsThe recommendations will guide healthcare professionals and patients towards a holistic and personalised management of SLE and SSc. Research and educational agendas were developed to address needs towards a higher evidence level, enhancement of clinician-patient communication and improved outcomes.
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收藏
页码:720 / 729
页数:10
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