Needs and preferences regarding health care delivery as perceived by patients with systemic sclerosis

Clinical Rheumatology

Volumn 30, Issue 6, 2011, Pages 815-824

  Schouffoer, Anne A ^a   Zirkzee, Elisabeth J M ^a   Henquet, Stella M ^a   Caljouw, Monique A A ^a   Steup Beekman, Gerda M ^a   Van Laar, Jacob M ^a,b   Vlieland, Theodora P M Vliet ^a  

^a LEIDEN UNIVERSITY MEDICAL CENTER   (Netherlands)

^b NEWCASTLE UNIVERSITY   (United Kingdom)

Author keywords

Health care; Systemic sclerosis; Unmet needs

Indexed keywords

ADULT; ARTICLE; FEMALE; HEALTH CARE DELIVERY; HEALTH CARE NEED; HEALTH SERVICE; HUMAN; MAJOR CLINICAL STUDY; MALE; MEDICAL INFORMATION; PRIORITY JOURNAL; QUALITY OF LIFE; QUESTIONNAIRE; SYSTEMIC SCLEROSIS;

ADULT; AGED; CROSS-SECTIONAL STUDIES; DATA COLLECTION; DELIVERY OF HEALTH CARE; HUMANS; INFORMATION DISSEMINATION; MALE; MIDDLE AGED; NEEDS ASSESSMENT; NETHERLANDS; PATIENT PREFERENCE; QUALITY OF LIFE; SCLERODERMA, SYSTEMIC; SOCIAL CLASS;

EID: 79959618447     PISSN: 07703198     EISSN: 14349949     Source Type: Journal    
DOI: 10.1007/s10067-010-1645-6     Document Type: Article

References (26)

1. Preliminary criteria for the classification of systemic sclerosis (scleroderma). Subcommittee for Scleroderma (1980) Criteria of the American Rheumatism Association Diagnostic and Therapeutic Criteria Committee: Arthritis Rheum 23:581-590
2. Antonioli CM, Bua G, Frige A, Prandini K, Radici S, Scarsi M, Danieli E, Malvicini A, Airo P (2009) An individualized rehabilitation program in patients with systemic sclerosis may improve quality of life and hand mobility. Clin Rheumatol 28:159-165
3. Bernatsky S, Panopolis P, Hudson M, Pope J, Leclercq S, Robinson D, Jones N, Markland J, bu-Hakima M, Mathieu JP, Docherty P, Khalidi N, Sutton E, Baron M (2009) Demographic and clinical factors associated with physician service use in systemic sclerosis. J Rheumatol 36:96-98
4. Clements PJ, Wong WK, Hurwitz EL, Furst DE, Mayes M, White B, Wigley F, Weisman M, Barr W, Moreland L, Medsger TA Jr, Steen V, Martin RW, Collier D, Weinstein A, Lally E, Varga J, Weiner SR, Andrews B, Abeles M, Seibold JR (2001) The Disability Index of the Health Assessment Questionnaire is a predictor and correlate of outcome in the high-dose versus lowdose penicillamine in systemic sclerosis trial. Arthritis Rheum 44:653-661 (Pubitemid 32234624)
5. Edworthy SM, Devins GM, Watson MM (1995) The Arthritis Knowledge Questionnaire. A test for measuring patient knowledge of arthritis and its self-management. Arthritis Rheum 38:590-600
6. Essink-Bot ML, Krabbe PF, Bonsel GJ, Aaronson NK (1997) An empirical comparison of four generic health status measures. The Nottingham Health Profile, the Medical Outcomes study 36-item Short-Form Health Survey, the COOP/WONCA Charts, and the EuroQol Instrument. Med Care 35:522-537
7. Genth E, Baltscheit C (2003) Patient education "systemic sclerosis". Z Rheumatol 62:II24-II25
8. Gordon MM, Capell HA, Madhok R (2002) The use of the Internet as a resource for health information among patients attending a rheumatology clinic. Rheumatology (Oxford) 41:1402-1405 (Pubitemid 36004317)
9. Hennell SL, Brownsell C, Dawson JK (2004) Development, validation and use of a Patient Knowledge Questionnaire (PKQ) for patients with early rheumatoid arthritis. Rheumatology (Oxford) 43:467-471 (Pubitemid 38489364)
10. Hudson M, Thombs BD, Steele R, Panopalis P, Newton E, Baron M (2009) Quality of life in patients with systemic sclerosis compared to the general population and patients with other chronic conditions. J Rheumatol 36:768-772
11. Jacobi CE, Rupp I, Boshuizen HC, Triemstra M, Dinant HJ, van den Bos GA (2004) Unmet demands for health care among patients with rheumatoid arthritis: indications for underuse? Arthritis Rheum 51:440-446
12. Johnson SR, Carette S, Dunne JV (2006) Scleroderma: health services utilization from patients' perspective. J Rheumatol 33:1123-1127 (Pubitemid 43825463)
13. Khanna D, Ahmed M, Furst DE, Ginsburg SS, Park GS, Hornung R, Tsevat J (2007) Health values of patients with systemic sclerosis. Arthritis Rheum 57:86-93
14. Kjeken I, Dagfinrud H, Mowinckel P, Uhlig T, Kvien TK, Finset A (2006) Rheumatology care: involvement in medical decisions, received information, satisfaction with care, and unmet health care needs in patients with rheumatoid arthritis and ankylosing spondylitis. Arthritis Rheum 55:394-401 (Pubitemid 43887025)
15. LeRoy EC, Black C, Fleischmajer R, Jablonska S, Krieg T, Medsger TA Jr, Rowell N, Wollheim F (1988) Scleroderma (systemic sclerosis): classification, subsets and pathogenesis. J Rheumatol 15:202-205 (Pubitemid 18073738)
16. Leung YY, Tam LS, Lee KW, Leung MH, Kun EW, Li EK (2009) Involvement, satisfaction and unmet health care needs in patients with psoriatic arthritis. Rheumatology (Oxford) 48:53-56
17. Lineker SC, Badley EM, Hughes EA, Bell MJ (1997) Development of an instrument to measure knowledge in individuals with rheumatoid arthritis: the ACREU rheumatoid arthritis knowledge questionnaire. J Rheumatol 24:647-653 (Pubitemid 27146079)
18. Mawdsley AH (2006) Patient perception of UK scleroderma services - results of an anonymous questionnaire. Rheumatology (Oxford) 45:1573
19. Meesters JJ, Vliet Vlieland TP, Hill J, Ndosi ME (2009) Measuring educational needs among patients with rheumatoid arthritis using the Dutch version of the Educational Needs Assessment Tool (DENAT). Clin Rheumatol 28:1073-1077
20. Merkel PA, Herlyn K, Martin RW, Anderson JJ, Mayes MD, Bell P, Korn JH, Simms RW, Csuka ME, Medsger TA Jr, Rothfield NF, Ellman MH, Collier DH, Weinstein A, Furst DE, Jimenez SA, White B, Seibold JR, Wigley FM (2002) Measuring disease activity and functional status in patients with scleroderma and Raynaud's phenomenon. Arthritis Rheum 46:2410-2420
21. Moses N, Wiggers J, Nicholas C, Cockburn J (2005) Prevalence and correlates of perceived unmet needs of people with systemic lupus erythematosus. Patient Educ Couns 57:30-38 (Pubitemid 40431910)
22. Neame R, Hammond A, Deighton C (2005) Need for information and for involvement in decision making among patients with rheumatoid arthritis: a questionnaire survey. Arthritis Rheum 53:249-255 (Pubitemid 40530166)
23. Rubenzik TT, Derk CT (2009) Unmet patient needs in systemic sclerosis. J Clin Rheumatol 15:106-110
24. Samuelson UK, Ahlmen EM (2000) Development and evaluation of a patient education program for persons with systemic sclerosis (scleroderma). Arthritis Care Res 13:141-148
25. Teunissen, HA, van Lankveld WGJM, Vonk MC, van den Hoogen FHJ (2005) Systemische sclerose: de gevolgen voor het psychisch en lichamelijk functioneren, en de behoefte aan begeleiding. Nederlands tijdschrift voor reumatologie 2005(4), 33-39
26. Ware JE KMKS (1994) SF-36 Health Survey Manual and Interpretation Guide.