Impact of hand and face disabilities on global disability and quality of life in systemic sclerosis patients

Clinical and Experimental Rheumatology

Volumn 32, Issue 6, 2014, Pages S15-S20

  Maddali Bongi, S ^a   Rosso, A Del ^a   Mikhaylova, S ^a   Francini, B ^a   Branchi, A ^a   Baccini, M ^b   Matucci Cerinic, M ^a  

^a UNIVERSITY OF FLORENCE   (Italy)

^b UNIVERSITY OF FLORENCE   (Italy)

Author keywords

CHFDS; Disability; Face; Hand; HAQ; MHISS; Quality of life; SF36; Systemic sclerosis

Indexed keywords

ADULT; ARTICLE; COCHIN HAND FUNCTION DISABLITY SCALE; CORRELATIONAL STUDY; DISABILITY; FACE DISORDER; FEMALE; HAND DISEASE; HAND MOBILITY IN SCLERODERMA TEST; HAND MOVEMENT; HEALTH ASSESSMENT QUESTIONNAIRE; HUMAN; MAJOR CLINICAL STUDY; MALE; MOUTH HANDICAP IN SYSTEMIC SCLEROSIS SCALE; PRIORITY JOURNAL; QUALITY OF LIFE; SHORT FORM 36; SYSTEMIC SCLEROSIS; AGED; DAILY LIFE ACTIVITY; DIFFUSE SCLERODERMA; DISABLED PERSON; LIMITED SCLERODERMA; MIDDLE AGED; PATHOPHYSIOLOGY; PSYCHOLOGY; QUESTIONNAIRE; SKIN DISEASE;

ACTIVITIES OF DAILY LIVING; AGED; DISABLED PERSONS; FACIAL DERMATOSES; FEMALE; HAND DERMATOSES; HUMANS; MALE; MIDDLE AGED; QUALITY OF LIFE; SCLERODERMA, DIFFUSE; SCLERODERMA, LIMITED; SCLERODERMA, SYSTEMIC; SURVEYS AND QUESTIONNAIRES;

EID: 85006253431     PISSN: 0392856X     EISSN: 1593098X     Source Type: Journal    
DOI: None     Document Type: Article

References (50)

1. WIGLEY FM: Systemic Sclerosis: Clinical features. In KLIPPEL JH, DIEPPE PA (Eds.) Rheumatology. London: Mosby; 1998 7: 9.1-14.
2. POOLE JL: Musculoskeletal rehabilitation in the person with scleroderma. Curr Opin Rheumatol 2010; 22: 205-12.
3. BROWER LM, POOLE JL: Reliability and validity of the Duruoz Hand Index in persons with systemic sclerosis (scleroderma). Arthritis Rheum 2004; 51: 805-9.
4. SANDQVIST G, EKLUND M: Hand Mobility in Scleroderma (HAMIS) test: the reliability of a novel hand function test. Arthritis Care Res 2000; 13: 369-74.
5. SANDQVIST G, EKLUND M: Validity of HAMIS: a test of hand mobility in scleroderma. Arthritis Care Res 2000; 13: 382-7.
6. MADDALI-BONGI S, DEL ROSSO A, GALLUCCIO F 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: 1167-73.
7. NAGY G, KOVáCS J, ZEHER M, CZIRJáK L: Analysis of the oral manifestations of systemic sclerosis. Oral Surg Oral Med Oral Pathol 1994; 77: 141-6.
8. ALBILIA JB, LAM DK, BLANAS N et al.: Small mouths .. Big problems? A review of scleroderma and its oral health implications. J Can Dent Assoc 2007; 73: 831-6.
9. SHAH AA, WIGLEY FM: Often forgotten manifestations of systemic sclerosis. Rheum Dis Clin North Am 2008; 34: 221-38; ix
10. MOUTHON L, RANNOU F, BéREZNé A 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: 1651-5.
11. PAQUETTE DL, FALANGA V: Cutaneous concerns of scleroderma patients. J Dermatol 2003; 30: 438-43.
12. van LANKVELD WGJM, VONK MC, TEUNISSEN H, van den HOOGEN FHJ: Appearance self-esteem in systemic sclerosis -subjective experience of skin deformity and its relationship with physician-assessed skin involvement, disease status and psychological variables. Rheumatology (Oxford). 2007; 46: 872-6.
13. JOACHIM G, ACORN S: Life with a rare chronic disease: the scleroderma experience. J Adv Nurs 2003; 42: 598-606.
14. BENRUD-LARSON LM, HEINBERG LJ, BOLING C et al.: Body image dissatisfaction among women with scleroderma: extent and relationship to psychosocial function. Health Psychol 2003; 22: 130-9.
15. CLEMENTS PJ, WONG WK, HURWITZ EL 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: 653-61.
16. SULTAN N, POPE JE, CLEMENTS PJ; Scleroderma Trials Study Group: The health assessment questionnaire (HAQ) is strongly predictive of good outcome in early diffuse scleroderma: results from an analysis of two randomized controlled trials in early diffuse scleroderma. Rheumatology (Oxford) 2004; 43: 472-8.
17. LA MONTAGNA G, CUOMO G, CHIAROLANZA I, RUOCCO L, VALENTINI G: HAQ-DI Italian version in systemic sclerosis. Reumatismo 2006; 58: 112-5.
18. JOHNSON SR, GLAMAN DD, SCHENTAG CT, LEE P: Quality of life and functional status in systemic sclerosis compared to other rheumatic diseases. J Rheumatol 2006; 33: 1117-22.
19. POOLE JL, STEEN VD: The use of the Health Assessment Questionnaire (HAQ) to determine physical disability in systemic sclerosis. Arthritis Care Res 1991; 4: 27-31.
20. KUWANA M, SATO S, KIKUCHI K et al.: Evaluation of functional disability using the health assessment questionnaire in Japanese patients with systemic sclerosis. J Rheumatol 2003; 30: 1253-8.
21. MERKEL PA, HERLYN K, MARTIN RW et al.: Measuring disease activity and functional status in patients with scleroderma and Raynaud's phenomenon. Arthritis Rheum 2002; 46: 2410-20.
22. DEL ROSSO A, BOLDRINI M, D'AGOSTINO D et al.: Health-related quality of life in systemic sclerosis as measured by the Short Form 36: relationship with clinical and biologic markers. Arthritis Rheum 2004 15; 51: 475-81.
23. FRANCK-LARSSON K, GRAF W, RöNNBLOM A: Lower gastrointestinal symptoms and quality of life in patients with sistemic sclerosis: a population-based study. Eur J Gastroenterol Hepatol 2009; 21: 176-82.
24. GEORGES C, CHASSANY O, TOLEDANO C et al.: Impact of pain in health related quality of life of patients with systemic sclerosis. Rheumatology (Oxford) 2006; 45: 1298-302.
25. DANIELI E, AIRÒ P, BETTONI L et al.: Healthrelated 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: 48-54.
26. HUDSON M, THOMBS BD, STEELE R, PANOPALIS P, NEWTON E, BARON M; Canadian Scleroderma Research Group: Health-related quality of life in systemic sclerosis: a systematic review. Arthritis Rheum 2009; 6: 1112-20.
27. HUDSON M, STEELE R, LU Y, THOMBS BD, PANOPALIS P, BARON M; Canadian Scleroderma Research Group: Clinical correlates of self-reported physical health status in sistemic sclerosis. J Rheumatol 2009; 36: 1226-9.
28. BARON M, SUTTON E, HUDSON M et al.: The relationship of dyspnoea to function and quality of life in sistemic sclerosis. Ann Rheum Dis 2008; 67: 644-50.
29. MOUTHON L, MESTRE-STANISLAS C, BéREZNé A et al.: Impact of digital ulcers on disability and health-related quality of life in systemic sclerosis. Ann Rheum Dis 2010; 69: 214-7.
30. LeROY EC, BLACK CM, FLEISCHMAJER R et al.: Scleroderma (systemic sclerosis): classification, subsets and pathogenesis. J Rheumatol 1988; 15: 202-5.
31. Subcommittee for scleroderma criteria of the American Rheumatism Ass ociation Diagnost ic and Therapeutic Criteria Committ ee: Preliminary criteria for the classification of systemic sclerosis (scleroderma). Arthritis Rheum 1980; 23: 581-90.
32. CLEMENTS P, LACHENBRUCH P, SEIBOLD J et al.: Inter and intraobserver variability of total skin thickness score (modified Rodnan TSS) in systemic sclerosis. J Rheumatol 1995; 22: 1281-5.
33. VITALI C, BOMBARDIERI S, JONSSON R et al.: Classification criteria for Sjögren's syndrome: a revised version of the European criteria proposed by the American-European Consensus Group. Ann Rheum Dis 2002; 61: 554-8.
34. APOLONE G, MOSCONI P: The Italian SF-36 Health Survey: translation, validation and norming. J Clin Epidemiol 1998; 51: 1025-36.
35. RANZA R, MARCHESONI A, CALORI et al.: The Italian version of the Functional Disability Index of the Health Assessment Questionnaire. A reliable instrument for multicenter studies on rheumatoid arthritis. Clin Exp Rheumatol 1993; 11: 123-8.
36. INGEGNOLI F, GALBIATI V, BORACCHI P et al.: Reliability and validity of the Italian version of the hand functional disability scale in patients with systemic sclerosis. Clin Rheumatol 2008; 27: 743-9.
37. DEL ROSSO A, MADDALI-BONGI S, SIGISMONDI F et al.: The Italian version of the Hand Mobility in Scleroderma (HAMIS) test: evidence for its validity and reliability. Clin Exp Rheumatol 2010; 28 (Suppl. 62): S42-7.
38. MADDALI BONGI S, DEL ROSSO A, MINIATI I 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: 2785-90.
39. FURST DE, CLEMENTS PJ, HARRIS R, ROSS M, LEVY J, PAULUS HE: Measurement of clinical change in progressive systemic sclerosis: a 1 year double-blind placebo-controlled trial of N-acetylcysteine. Ann Rheum Dis 1979; 38: 356-61.
40. MADDALI BONGI S, DEL ROSSO A, GALLUCCIO F et al.: M.Efficacy of a tailored rehabilitation program for systemic sclerosis. Clin Exp Rheumatol 2009; 27 (Suppl. 54): 44-50.
41. MADDALI BONGI S, DEL ROSSO A, PASSALACQUA M et al.: Manual lymph drainage improving upper extremity edema and hand function in patients with systemic sclerosis in edematous phase. Arthritis Care Res (Hoboken) 2011; 63: 1134-41.
42. RANNOU F, POIRAUDEAU S, BEREZNé A 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: 94-102.
43. KEILLOR JM, BARRETT AM, CRUCIAN GP, KORTENKAMP S, HEILMAN KM: Emotional experience and perception in the absence of facial feedback. J Int Neuropsychol Soc 2002; 8: 130-5.
44. ENNIS H, HERRICK AL, CASSIDY C, GRIFFITHS CE, RICHARDS HL: A pilot study of body image dissatisfaction and the psychological impact of systemic sclerosis-related telangiectases. Clin Exp Rheumatol 2013; 31 (Suppl. 76): S12-7
45. HARDING S, KHIMDAS S, BONNER A, BARON M, POPE J; Canadian Scleroderma Research Group: Best practices in scleroderma: an analysis of practice variability in SSc centres within the Canadian Scleroderma Research Group (CSRG). Clin Exp Rheumatol 2012; 30 (Suppl. 71): S38-43.
46. DELLA ROSSA A, CAZZATO M, d'ASCANIO A et al.: Alteration of microcirculation is a hallmark of very early systemic sclerosis patients: a laser speckle contrast analysis. Clin Exp Rheumatol 2013; 31 (Suppl. 76): S109-14.
47. MADDALI-BONGI S, LANDI G, GALLUCCIO F et al.: The rehabilitation of facial involvement in systemic sclerosis: efficacy of the combination of connective tissue massage, Kabat's technique and kinesitherapy: a randomized controlled trial. Rheumatol Int 2011; 31: 895-901.
48. 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: 175-8.
49. ANTONIOLI CM, BUA G, FRIG A et al.: An individualized rehabilitation program in patients with systemic sclerosis may improve quality of life and hand mobility. Clin Rheumatol 2009; 28: 159-65.
50. KWAKKENBOS L, BLUYSSEN SJ, VONK MC et al.: Addressing patient health care demands in sistemi sclerosis: pre-post assessment of a psycho-educational group programme. Clin Exp Rheumatol 2011; 29 (Suppl. 65): S60-5.