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Validation of Czech versions of questionnaires assessing functional impairment in patients with systemic sclerosis: Scleroderma Health Assessment Questionnaire (SHAQ), Cochin Hand Functional Scale (CHFS), Mouth Handicap in Systemic Sclerosis (MHISS), UCLA Scleroderma Clinical Trial Consortium Gastrointestinal Tract 2.0 (UCLA SCTC GIT 2.0)


Authors: S. Heřmánková B.oreská * 1,* 2,3;  H. Šmucrová 2;  M. Mikulášová 2;  M. Špiritović 1,2;  H. Štorkánová 2,3;  R. Bečvář 2,3;  J. Vencovský 2,3;  H. Mann 2,3;  M. Tomčík 2,3
Authors‘ workplace: autorky přispěly stejnou mírou *;  Fakulta tělesné výchovy a sportu, Katedra fyzioterapie, Univerzita Karlova, Praha 1;  Revmatologický ústav Praha 2;  Revmatologická klinika 1. lékařské fakulty, Univerzita Karlova, Praha 3
Published in: Čes. Revmatol., 28, 2020, No. 4, p. 216-230.
Category: Original article

Overview

significant impact on a patient’s quality of life. Several specific tools have been developed to assess the impact of this disease on the patient’s functional disability in everyday life, including Scleroderma Health Assessment Questionaire (SHAQ), Cochin Hand Functional Scale (CHFS), Mouth Handicap in Systemic Sclerosis (MHISS) a UCLA Scleroderma Clinical Trial Consortium Gastrointestinal Tract 2.0 (UCLA SCTC GIT 2.0).

The aim of this work was to perform the Czech translation and linguistic validation of the above-mentioned Patient-reported outcome measures. The original versions of the questionnaires were translated by three independent bilingual rheumatologists and consensually discussed and synthesized by the authors of this paper. In the next step, six bilingual non-physicians commented on the linguistic and content aspects of the questionnaires, and their comments were taken into account by an expert panel. Subsequently, two independent blinded translators carried out a back-translation. Consensually, pre-final Czech versions of the questionnaires were created, which were afterward filled out by 55 patients with SSc.

A feedback questionnaire was used to assess the comprehensibility and conciseness of each question. All patients with SSc considered questionnaires clear and understandable. This work has resulted in the development of the Czech versions of the SHAQ, CHFS, MHISS, and UCLA SCTC GIT 2.0. questionnaires. Patients with SSc achieved scores that were numerically similar to the results of previously published studies. These questionnaires may be appropriate tools to be used in clinical research and routine clinical practice.

Keywords:

systemic sclerosis – Scleroderma Health Assessment Questionaire – Cochin Hand Functional Scale –Mouth Handicap in Systemic Sclerosis – UCLA Scleroderma Clinical Trial Consortium Gastrointestinal Tract (UCLA GIT 2.0) – linguistic validation


Sources

1. Firestein GS, Budd RC, Gabriel SE, McInnes IB, O’Dell JR. Kelley’s Textbook of Rheumatology E-Book: Elsevier Health Sciences 2012.

2. Allcock RJ, Forrest I, Corris PA, Crook PR, Griffiths ID. A study of the prevalence of systemic sclerosis in northeast England. Rheumatology (Oxford) 2004; 43(5): 596–602.

3. Brady SM, Shapiro L, Mousa SA. Current and future direction in the management of scleroderma. Arch Dermatol Res 2016; 308(7): 461–471.

4. Khanna D, Furst DE, Clements PJ, Park GS, Hays RD, Yoon J, et al. Responsiveness of the SF-36 and the Health Assessment Questionnaire Disability Index in a systemic sclerosis clinical trial. J Rheumatol 2005; 32(5): 832–840.

5. Hudson M, Thombs BD, Steele R, Panopalis P, Newton E, Baron M, et al. Quality of life in patients with systemic sclerosis compared to the general population and patients with other chronic conditions. J Rheumatol 2009; 36(4): 768–772.

6. Mouthon L, Rannou F, Berezne A, Pagnoux C, Guilpain P, Goldwasser F, et al. Patient preference disability questionnaire in systemic sclerosis: a cross-sectional survey. Arthritis Rheum 2008; 59(7): 968–973.

7. Pope J. Measures of systemic sclerosis (scleroderma): Health Assessment Questionnaire (HAQ) and Scleroderma HAQ (SHAQ), physician- and patient-rated global assessments, Symptom Burden Index (SBI), University of California, Los Angeles, Scleroderma Clinical Trials Consortium Gastrointestinal Scale (UCLA SCTC GIT) 2.0, Baseline Dyspnea Index (BDI) and Transition Dyspnea Index (TDI) (Mahler’s Index), Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR), and Raynaud’s Condition Score (RCS). Arthritis Care Res (Hoboken) 2011; 63(Suppl 11): S98–111.

8. Guyatt GH, Feeny DH, Patrick DL. Measuring health-related quality of life. Ann Intern Med 1993; 118(8): 622–629.

9. Hays RD, Hadorn D. Responsiveness to change: an aspect of validity, not a separate dimension. Qual Life Res 1992; 1(1): 73–75.

10. Poole JL, Steen VD. The use of the Health Assessment Questionnaire (HAQ) to determine physical disability in systemic sclerosis. Arthritis Care Res 1991; 4(1): 27–31.

11. Johnson SR, Hawker GA, Davis AM. The health assessment questionnaire disability index and scleroderma health assessment questionnaire in scleroderma trials: an evaluation of their measurement properties. Arthritis Rheum 2005; 53(2): 256–262.

12. Steen VD, Medsger TA, Jr. The value of the Health Assessment Questionnaire and special patient-generated scales to demonstrate change in systemic sclerosis patients over time. Arthritis Rheum 1997; 40(11): 1984–1991.

13. Smyth A, MacGregor A, Mukerjee D, Brough G, Black C, Denton C. A cross-sectional comparison of three self-reported functional indices in scleroderma. Rheumatology 2003; 42(6): 732–738.

14. Bruce B, Fries JF. The Stanford Health Assessment Questionnaire: dimensions and practical applications. Health Qual Life Outcomes 2003; 1: 20.

15. Georges C, Chassany O, Mouthon L, Tiev K, Toledano C, Meyer O, et al. Validation of French version of the Scleroderma Health Assessment Questionnaire (SSc HAQ). Clin Rheumatol 2005; 24(1): 3–10.

16. Entin MA, Wilkinson RD. Scleroderma hand: a reappraisal. Orthop Clin North Am 1973; 4(4): 1031–1038.

17. Palmer DG, Hale GM, Grennan DM, Pollock M. Bowed fingers. A helpful sign in the early diagnosis of systemic sclerosis. J Rheumatol 1981; 8(2): 266–272.

18. Rannou F, Poiraudeau S, Berezne A, Baubet T, Le-Guern V, Cabane J, et al. Assessing disability and quality of life in systemic sclerosis: construct validities of the Cochin Hand Function Scale, Health Assessment Questionnaire (HAQ), Systemic Sclerosis HAQ, and Medical Outcomes Study 36-Item Short Form Health Survey. Arthritis Rheum 2007; 57(1): 94–102.

19. Sandqvist G, Eklund M. Hand Mobility in Scleroderma (HAMIS) test: the reliability of a novel hand function test. Arthritis Care Res 2000; 13(6): 369–374.

20. Poole JL, Gallegos M, O’Linc S. Reliability and validity of the Arthritis Hand Function Test in adults with systemic sclerosis (scleroderma). Arthritis Care Res 2000; 13(2): 69–73.

21. Brower LM, Poole JL. Reliability and validity of the Duruoz Hand Index in persons with systemic sclerosis (scleroderma). Arthritis Rheum 2004; 51(5): 805–809.

22. Sandqvist G, Eklund M. Validity of HAMIS: a test of hand mobility in scleroderma. Arthritis Care Res 2000; 13(6): 382–387.

23. Duruoz MT, Poiraudeau S, Fermanian J, Menkes CJ, Amor B, Dougados M, et al. Development and validation of a rheumatoid hand functional disability scale that assesses functional handicap. J Rheumatol 1996; 23(7): 1167–1172.

24. Poiraudeau S, Lefevre-Colau MM, Fermanian J, Revel M. The ability of the Cochin rheumatoid arthritis hand functional scale to detect change during the course of disease. Arthritis Care Res 2000; 13(5): 296–303.

25. Poiraudeau S, Chevalier X, Conrozier T, Flippo RM, Liote F, Noel E, et al. Reliability, validity, and sensitivity to change of the Cochin hand functional disability scale in hand osteoarthritis. Osteoarthritis Cartilage 2001; 9(6): 570–577.

26. Nguyen C, Poiraudeau S, Mestre-Stanislas C, Rannou F, Berezne A, Papelard A, et al. Employment status and socio-economic burden in systemic sclerosis: a cross-sectional survey. Rheumatology (Oxford) 2010; 49(5): 982–989.

27. Mouthon L, Rannou F, Berezne A, Pagnoux C, Arene JP, Fois E, et al. Development and validation of a scale for mouth handicap in systemic sclerosis: the Mouth Handicap in Systemic Sclerosis scale. Ann Rheum Dis 2007; 66(12): 1651–1655.

28. Avouac J, Sordet C, Depinay C, Ardizonne M, Vacher-Lavenu MC, Sibilia J, et al. Systemic sclerosis-associated Sjogren’s syndrome and relationship to the limited cutaneous subtype: results of a prospective study of sicca syndrome in 133 consecutive patients. Arthritis Rheum 2006; 54(7): 2243–2249.

29. Salliot C, Mouthon L, Ardizzone M, Sibilia J, Guillevin L, Gottenberg JE, et al. Sjögren’s syndrome is associated with and not secondary to systemic sclerosis. Rheumatology (Oxford) 2007; 46(2): 321–326.

30. Tore NG, Sarì F, Tunà Z, Kucuk H, Haznedaroglu S, Oskay D. Translation, validation and cross-cultural adaptation of the mouth handicap in systemic sclerosis questionnaire into the Turkish language. Int J Rheum Dis 2020; 23(5): 669–673.

31. Sjögren RW. Gastrointestinal motility disorders in scleroderma. Arthritis Rheum 1994; 37(9): 1265–1282.

32. Lock G, Holstege A, Lang B, Scholmerich J. Gastrointestinal manifestations of progressive systemic sclerosis. Am J Gastroenterol 1997; 92(5): 763–771.

33. Nietert PJ, Mitchell HC, Bolster MB, Curran MY, Tilley BC, Silver RM. Correlates of depression, including overall and gastrointestinal functional status, among patients with systemic sclerosis. J Rheumatol 2005; 32(1): 51–57.

34. Gliddon AE, Dore CJ, Maddison PJ, Quins Trial Study G. Influence of clinical features on the health status of patients with limited cutaneous systemic sclerosis. Arthritis Rheum 2006; 55(3): 473–479.

35. Khanna D, Hays RD, Park GS, Braun-Moscovici Y, Mayes MD, McNearney TA, et al. Development of a preliminary scleroderma gastrointestinal tract 1.0 quality of life instrument. Arthritis Rheum 2007; 57(7): 1280–1286.

36. Khanna D, Hays RD, Maranian P, Seibold JR, Impens A, Mayes MD, et al. Reliability and validity of the University of California, Los Angeles Scleroderma Clinical Trial Consortium Gastrointestinal Tract Instrument. Arthritis Rheum 2009; 61(9): 1257–1263.

37. Trezza M, Krogh K, Egekvist H, Bjerring P, Laurberg S. Bowel problems in patients with systemic sclerosis. Scand J Gastroenterol 1999; 34(4): 409–413.

38. Tay T, Ferdowsi N, Baron M, Stevens W, Hudson M, Proudman SM, et al. Measures of disease status in systemic sclerosis: A systematic review. Semin Arthritis Rheum 2017; 46(4): 473–487.

39. Beaton DE, Bombardier C, Guillemin F, Ferraz MB. Guidelines for the process of cross-cultural adaptation of self-report measures. Spine 2000; 25(24): 3186–3191.

40. van Den Hoogen F, Khanna D, Fransen J, Johnson SR, Baron M, Tyndall A, et al. 2013 classification criteria for systemic sclerosis: an American College of Rheumatology/European League against Rheumatism collaborative initiative. Arthritis Rheum 2013; 65(11): 2737–2747.

41. Klusoňová E. Ergoterapie v praxi: Národní centrum ošetřovatelství a nelékařských zdravotnických oborů 2011.

42. Danieli E, Airo P, Bettoni L, Cinquini M, Antonioli CM, Cavazzana I, et al. Health-related quality of life measured by the Short Form 36 (SF-36) in systemic sclerosis: correlations with indexes of disease activity and severity, disability, and depressive symptoms. Clin Rheumatol 2005; 24(1): 48–54.

43. Meijs J, Pors D, Vliet Vlieland T, Huizinga T, Schouffoer A. Translation, cross-cultural adaptation, and validation of the UCLA Scleroderma Clinical Trial Consortium Gastrointestinal Tract Instrument (SCTC GIT) 2.0 into Dutch. Clin Exp Rheumatol 2014; 32(6 Suppl 86): S41–48.

44. Low AHL, Xin X, Law WG, Teng GG, Santosa A, Lim A, et al. Validation of the UCLA Scleroderma Clinical Trial Consortium Gastrointestinal Tract Instrument 2.0 in English-and Chinese-speaking patients in a multi-ethnic Singapore systemic sclerosis cohort. Clin Rheumatol 2017; 36(7): 1643–1648.

45. Taş YM, Hakim GD, Keskinoğlu P, Kenar G, Yarkan H, Zengin B, et al. The validity and reliability study of the University of California, Los Angeles Scleroderma Clinical Trial Consortium Gastrointestinal Tract (UCLA SCTC GIT) 2.0 questionnaire for the Turkish society. Turk J Gastroenterol 2019; 30(3): 234.

46. Maddali Bongi S, Del Rosso A, Miniati I, Galluccio F, Landi G, Tai G, et al. The Italian version of the Mouth Handicap in Systemic Sclerosis scale (MHISS) is valid, reliable and useful in assessing oral health-related quality of life (OHRQoL) in systemic sclerosis (SSc) patients. Rheumatol Int 2012; 32(9): 2785–2790.

47. Schouffoer AA, Strijbos E, Schuerwegh AJ, Mouthon L, Vliet Vlieland TP. Translation, cross-cultural adaptation, and validation of the Mouth Handicap in Systemic Sclerosis questionnaire (MHISS) into the Dutch language. Clin Rheumatol 2013; 32(11): 1649–1655.

48. Chiari A, Sardim CCdS, Natour J. Translation, cultural adaptation and reproducibility of the Cochin Hand Functional Scale questionnaire for Brazil. Clinics 2011; 66(5): 731–736.

49. Karadag DT, Karakas F, Tekeoglu S, Yazici A, Isik OO, Cefle A. Validation of Turkish version of the Scleroderma Health Assessment Questionnaire. Clin Rheumatol 2019; 38(7): 1917–1923.

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Dermatology & STDs Paediatric rheumatology Rheumatology

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