Justification del Estudio

Chapter 4 Mouth Handicap in Systemic Sclerosis questionnaire (MHISS)

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Reference List

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(2) Mehra A, Kumar S. Periodontal manifestations in systemic sclerosis: a review. Dent Today 2008; 27(6):50, 52, 54.

(3) Albilia JB, Lam DK, Blanas N, Clokie CM, Sandor GK. Small mouths ... Big problems? A review of scleroderma and its oral health implications. J Can Dent Assoc 2007; 73(9):831-6.

(4) Rosenthal IH. Generalized scleroderma; hidebound disease, its relation to the oral cavity, with case history and dental restoration. Oral Surg Oral Med Oral Pathol 1948; 1(11):1019-28.

(5) Swaminathan S, Goldblatt F, Dugar M, Gordon TP, Roberts-Thomson PJ. Prevalence of sicca symptoms in a South Australian cohort with systemic sclerosis. Intern Med J 2008; 38(12):897-903.

(6) Salliot C, Mouthon L, Ardizzone M, Sibilia J, Guillevin L, Gottenberg JE et al. Sjogren’s syndrome is associated with and not secondary to systemic sclerosis. Rheumatology (Oxford) 2007; 46(2):321-6.

(7) Lambert M, Tomasi JP, Peeters A. Sjogren’s syndrome associated with CREST and positive antibodies to Ro(SSA)/La(SSB). J Rheumatol 1993; 20(1):203-4.

(8) Pizzo G, Scardina GA, Messina P. Effects of a nonsurgical exercise program on the decreased mouth opening in patients with systemic scleroderma. Clin Oral Investig 2003; 7(3):175-8.

(9) Maddali BS, Del RA, Galluccio F, Tai G, Sigismondi F, Passalacqua M et al. Efficacy of a tailored rehabilitation program for systemic sclerosis. Clin Exp Rheumatol 2009; 27(3 Suppl 54):44-50.

(10) 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):1651-5. (11) Maddali BS, Del RA, 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; Sep;32(9):2785-90

(12) Beaton DE, Bombardier C, Guillemin F, Ferraz MB. Guidelines for the process of cross-cultural adaptation of self-report measures. Spine 2000; 25(24):3186-91. (13) Guillemin F, Bombardier C, Beaton D. Cross-cultural adaptation of health-

related quality of life measures: literature review and proposed guidelines. J Clin Epidemiol 1993; 46(12):1417-32.

(14) Preliminary criteria for the classification of systemic sclerosis (scleroderma). Subcommittee for scleroderma criteria of the American Rheumatism Association Diagnostic and Therapeutic Criteria Committee. Arthritis Rheum 1980; 23(5):581- 90.

(15) LeRoy EC, Black C, Fleischmajer R, Jablonska S, Krieg T, Medsger TA, Jr. et al. Scleroderma (systemic sclerosis): classification, subsets and pathogenesis. J Rheumatol 1988; 15(2):202-5.

(16) Kohler PF, Winter ME. A quantitative test for xerostomia. The Saxon test, an oral equivalent of the Schirmer test. Arthritis Rheum 1985; 28(10):1128-32.

(17) Vitali C. Classification criteria for Sjogren’s syndrome. Ann Rheum Dis 2003; 62(1):94-5.

(18) Wood GD, Branco JA. A comparison of three methods of measuring maximal opening of the mouth. J Oral Surg 1979; 37(3):175-7.

(19) Clements PJ, Wong WK, Hurwitz EL, Furst DE, Mayes M, White B et al. The Disability Index of the Health Assessment Questionnaire is a predictor and correlate of outcome in the high-dose versus low-dose penicillamine in systemic sclerosis trial. Arthritis Rheum 2001; 44(3):653-61.

(20) Terwee CB, Bot SD, de Boer MR, van der Windt DA, Knol DL, Dekker J et al. Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol 2007; 60(1):34-42.

(21) Fermanian J. [Measuring agreement between 2 observers: a quantitative case]. Rev Epidemiol Sante Publique 1984; 32(6):408-13.

(22) A.A.Schuller. Mondgezondheid volwassenen, KvL/GL/2009.048 TNO, Nederlande organisatie voor toegepast natuurwetenschappelijk onderzoek. Ref Type: Online Source

(23) Bongi SM, Del RA, Galluccio F, Sigismondi F, Miniati I, Conforti ML et al. Efficacy of connective tissue massage and Mc Mennell joint manipulation in the rehabilitative treatment of the hands in systemic sclerosis. Clin Rheumatol 2009; 28(10):1167- 73.

(24) Mestre-Stanislas C, Poiraudeau S, Berezne A, Rannou F, Pagnoux C, Revel M et al. Differences in patients with systemic sclerosis recruited from associations and tertiary care settings. Presse Med 2010; 39(9):e205-e209.

Chapter 4 Mouth Handicap in Systemic Sclerosis questionnaire (MHISS)

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Appendix.

English MHISS scale (10)

0 1 2 3 4

1 I have difficulties opening my mouth 0 1 2 3 4

2 I have to avoid certain drinks (sparkling, alcohol, acidic) 0 1 2 3 4

3 I have difficulties chewing 0 1 2 3 4

4 My dentist has difficulties taking care of my teeth 0 1 2 3 4

5 My dentition has become altered 0 1 2 3 4

6 My lips are retracted and/or my cheeks are sunken 0 1 2 3 4

7 My mouth is dry 0 1 2 3 4

8 I must drink often 0 1 2 3 4

9 My meals consist of what I can eat and not what I would like to eat 0 1 2 3 4

10 I have difficulties speaking clearly 0 1 2 3 4

11 The appearance of my face is modified 0 1 2 3 4

12 I have trouble with he way my face looks 0 1 2 3 4

0=never; 1=rarely; 2=occasionally; 3=often; 4=always.

French generic MHISS scale supplied by L.Mouthon

0 1 2 3 4

1 Je suis géné(e) pour ouvrir la bouche 0 1 2 3 4

2 Je dois éviter certaines boissons (gazeuses, alcoolisées, acides) 0 1 2 3 4

3 J’ai des difficultés à mastiquer 0 1 2 3 4

4 Mon dentiste a des difficultés à effectuer les soins 0 1 2 3 4

5 L’état de mes dents s’est dégradé 0 1 2 3 4

6 Mes lèvres et/ou mes joues sont rétractées 0 1 2 3 4

7 Ma bouche est sèche 0 1 2 3 4

8 Je dois boire souvent 0 1 2 3 4

9

Je suis obligé(e) de choisir mon alimentation en fonction de ce que je peux manger et non en fonction de ce que j’ai envie de manger

0 1 2 3 4

10 Je suis géné(e) pour articuler les mots 0 1 2 3 4

11 L’apparence de mon visage s’est modifiée 0 1 2 3 4

12 J’ai une gène esthétique 0 1 2 3 4

0= Jamais ; 1=Rarement ; 2=Régulièrement ; 3=Souvent ; 4= Toujours

Dutch MHISS scale

1 Ik vind het lastig om mijn mond te openen 0 1 2 3 4

2 Ik moet bepaalde dranken vermijden (bruisende, _{alcoholische en/of zure dranken)} 0 1 2 3 4

3 Ik heb moeite met kauwbewegingen 0 1 2 3 4

7 Ik heb een droge mond 0 1 2 3 4

8 Ik moet vaak drinken 0 1 2 3 4

9 Ik moet mijn voedsel kiezen op grond van wat ik kan eten, _{en niet op grond van waar ik zin in heb} 0 1 2 3 4

10 Ik vind het lastig om te articuleren (woorden duidelijk uit

te spreken) 0 1 2 3 4

12 Ik voel mij niet prettig met mijn uiterlijk 0 1 2 3 4

4 Mijn tandarts heeft moeite om mijn gebit te behandelen 0* 1* 2* 3* 4* NA

5 De toestand van mijn gebit is verslechterd 0* 1* 2* 3* 4* NA

6 Mijn lippen en/of mijn wangen zijn strak getrokken 0* 1* 2* 3* 4*

11 Het uiterlijk van mijn gezicht en mond is veranderd 0* 1* 2* 3* 4*

0= Nooit ; 1= Zelden ; 2= Regelmatig ; 3= Vaak ; 4= Altijd; 5=gebitsprothese; 0*= helemaal oneens; 1*= oneens; 2*=neutraal; 3*=eens; 4*=helemaal eens; NA= not aplicable

CHAPTER

Validity and responsiveness of the Michigan