title: Health care in systemic lupus erythematosus (SLE): the patient's perspective.
abstract: In order to provide more patient-centered care for patients suffering from systemic lupus erythematosus (SLE), we studied their current satisfaction and preferences regarding future health care delivery. We sent questionnaires to all SLE patients visiting the rheumatology outpatient clinic in Leiden, the Netherlands. The questionnaire comprised three topics: (a) health care needs using a modified version of SLE Needs Questionnaire (range 0-38), (b) satisfaction with care per provider (visual analogue scale, range 0 (not at all)-100 (very satisfied)), and (c) preferences for future healthcare (four items). One hundred and two patients (63 % response) reported an average of 16 (±6) health care needs, with all patients reporting a need in the physical domain. More needs were significantly associated with worse physical functioning and a higher educational level. The average satisfaction score was 73 (±19) with a lower overall satisfaction score being associated with younger age and an educational level higher or lower than average. Regarding preferences for future health care delivery, 75 % of patients showed interest in a yearly standardized medical assessment, 57 % in regular, specialized nurse contacts using internet, 50 % in a yearly inventory on the need for self-management support, and 36 % in an education course. The association of age, education level and physical functioning with health care needs, and/or satisfaction suggest that the delivery of care should be better tailored to the needs of subgroups of patients.
authors.affiliation: Department of Rheumatology, Leiden University Medical Center, P.O. box 9600, Leiden, 2300 RC, Netherlands, E.J.M.Zirkzee@LUMC.nl.
authors.forename: E J M
authors.initials: EJ
authors.lastname: Zirkzee
authors.forename: G M
authors.initials: GM
authors.lastname: Steup-Beekman
authors.forename: A A
authors.initials: AA
authors.lastname: Schouffoer
authors.forename: S M
authors.initials: SM
authors.lastname: Henquet
authors.forename: M A A
authors.initials: MA
authors.lastname: Caljouw
authors.forename: T W J
authors.initials: TW
authors.lastname: Huizinga
authors.forename: T P M
authors.initials: TP
authors.lastname: Vliet Vlieland
mesh_terms: D000328:Adult; D000367:Age Factors; D003430:Cross-Sectional Studies; D004522:Educational Status; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D008180:Lupus Erythematosus, Systemic / Q000628:therapy*; D008875:Middle Aged; D020380:Needs Assessment; D057240:Patient Preference; D017060:Patient Satisfaction; D018802:Patient-Centered Care; D011795:Surveys and Questionnaires
references.citation: J Rheumatol. 1999 Jul;26(7):1500-11
references.pmid: 10405937
references.citation: Clin Exp Rheumatol. 2008 Sep-Oct;26(5 Suppl 51):S72-9
references.pmid: 19026147
references.citation: Musculoskeletal Care. 2012 Sep;10(3):135-41
references.pmid: 22514146
references.citation: J Rheumatol. 1993 Jun;20(6):972-6
references.pmid: 8350333
references.citation: Qual Life Res. 2007 Apr;16(3):461-6
references.pmid: 17091357
references.citation: Arthritis Care Res. 1999 Apr;12(2):85-95
references.pmid: 10513496
references.citation: Health Qual Life Outcomes. 2004 Jun 29;2:32
references.pmid: 15225377
references.citation: Arthritis Rheum. 2004 Jun 15;51(3):440-6
references.pmid: 15188331
references.citation: Arthritis Rheum. 1997 Sep;40(9):1725
references.pmid: 9324032
references.citation: Am J Med Qual. 2005 Jul-Aug;20(4):195-203
references.pmid: 16020676
references.citation: Rheumatology (Oxford). 2001 Jan;40(1):37-47
references.pmid: 11157140
references.citation: BMJ. 2003 Apr 19;326(7394):877-9
references.pmid: 12702627
references.citation: Lupus. 2011 Oct;20(11):1147-54
references.pmid: 21768174
references.citation: J Aging Health. 1990 May;2(2):242-60
references.pmid: 10104486
references.citation: Patient Educ Couns. 2005 Apr;57(1):30-8
references.pmid: 15797150
references.citation: Qual Life Res. 1999 Aug;8(5):411-6
references.pmid: 10474282
references.citation: Ann Rheum Dis. 2006 May;65(5):585-9
references.pmid: 16219711
references.citation: Arthritis Rheum. 2007 May 15;57(4):593-600
references.pmid: 17471526
references.citation: Arthritis Care Res. 1990 Jun;3(2):92-8
references.pmid: 2285748
references.citation: BMC Health Serv Res. 2012 Aug 17;12:261
references.pmid: 22900589
references.citation: Qual Life Res. 2008 Aug;17(6):867-76
references.pmid: 18553154
references.citation: Arthritis Care Res. 1996 Dec;9(6):463-72
references.pmid: 9136290
references.citation: Arthritis Rheum. 1992 Jun;35(6):630-40
references.pmid: 1599520
references.citation: BMJ Qual Saf. 2011 Apr;20(4):326-31
references.pmid: 21339310
references.citation: Breast Cancer Res. 2012 Mar 06;14(2):R37
references.pmid: 22394647
references.citation: Lupus. 2002;11(8):478-84
references.pmid: 12220101
references.citation: Rheumatology (Oxford). 1999 Nov;38(11):1130-7
references.pmid: 10556268
references.citation: Int J Qual Health Care. 1999 Jun;11(3):201-7
references.pmid: 10435840
references.citation: J Rheumatol. 1999 Nov;26(11):2352-6
references.pmid: 10555890
references.citation: Arch Intern Med. 2012 Apr 9;172(7):587-8
references.pmid: 22412074
references.citation: Behav Med. 2009 Spring;35(1):5-13
references.pmid: 19297299
references.citation: Arthritis Rheum. 1982 Nov;25(11):1271-7
references.pmid: 7138600
references.citation: Ann Rheum Dis. 2001 Sep;60(9):841-5
references.pmid: 11502610
references.citation: Curr Opin Rheumatol. 1995 Sep;7(5):402-8
references.pmid: 8519613
references.citation: Patient Educ Couns. 2011 Oct;85(1):53-9
references.pmid: 20869188