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.
Similar content being viewed by others
References
Gladman DD (1995) Prognosis treatment of systemic lupus erythematosus. Curr Opin Rheumatol 7(5):402–408
Ippolito A, Petri M (2008) An update on mortality in systemic lupus erythematosus. Clin Exp Rheumatol 26(5 Suppl 51):S72–S79
Sutcliffe N, Clarke AE, Taylor R, Frost C, Isenberg DA (2001) Total costs and predictors of costs in patients with systemic lupus erythematosus. Rheumatology (Oxford) 40(1):37–47
Yazdany J, Gillis JZ, Trupin L, Katz P, Panopalis P, Criswell LA et al (2007) Association of socioeconomic and demographic factors with utilization of rheumatology subspecialty care in systemic lupus erythematosus. Arthritis Rheum 57(4):593–600
Zirkzee EJ, Steup-Beekman GM, Schouffoer AA, Henquet SM, Caljouw MA, Huizinga TW, Vliet Vlieland TP (2011) Health care usage in Dutch systemic lupus erythematosus patients. Lupus:1147–54.
Asadi-Lari M, Tamburini M, Gray D (2004) Patients’ needs, satisfaction, and health related quality of life: towards a comprehensive model. Health Qual Life Outcome 2:32
Wensing M, Elwyn G (2003) Methods for incorporating patients’ views in health care. BMJ 326(7394):877–879
Danoff-Burg S, Friedberg F (2009) Unmet needs of patients with systemic lupus erythematosus. Behav Med 35(1):5–13
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(1):30–38
Moses N, Wiggers J, Nicholas C (2008) Persistence of unmet need for care among people with systemic lupus erythematosus: a longitudinal study. Qual Life Res 17(6):867–876
Bennett JK, Fuertes JN, Keitel M, Phillips R (2011) The role of patient attachment and working alliance on patient adherence, satisfaction, and health-related quality of life in lupus treatment. Patient Educ Couns 85(1):53–59
Sutcliffe N, Clarke AE, Levinton C, Frost C, Gordon C, Isenberg DA (1999) Associates of health status in patients with systemic lupus erythematosus. J Rheumatol 26(11):2352–2356
Da Costa D, Clarke AE, Dobkin PL, Senecal JL, Fortin PR, Danoff DS et al (1999) The relationship between health status, social support and satisfaction with medical care among patients with systemic lupus erythematosus. Int J Qual Health Care 11(3):201–207
Archenholtz B, Burckhardt CS, Segesten K (1999) Quality of life of women with systemic lupus erythematosus or rheumatoid arthritis: domains of importance and dissatisfaction. Qual Life Res 8(5):411–416
Rademakers J, Delnoij D, de Boer D (2011) Structure, process or outcome: which contributes most to patients’ overall assessment of healthcare quality? BMJ Qual Saf 20(4):326–331
Waldron N, Brown SJ, Hewlett S, Elliott B, McHugh N, McCabe CS (2012) ‘To suddenly have a name for this thing… was wonderful’: the patient’s experience of receiving a diagnosis of systemic lupus erythematosus. Musculoskelet Care 10(3):135–141
Hale ED, Treharne GJ, Lyons AC, Norton Y, Mole S, Mitton DL et al (2006) “Joining the dots” for patients with systemic lupus erythematosus: personal perspectives of health care from a qualitative study. Ann Rheum Dis 65(5):585–589
Hochberg MC (1997) Updating the American College of Rheumatology revised criteria for the classification of systemic lupus erythematosus. Arthritis Rheum 40(9):1725
Tan EM, Cohen AS, Fries JF, Masi AT, McShane DJ, Rothfield NF et al (1982) The 1982 revised criteria for the classification of systemic lupus erythematosus. Arthritis Rheum 25(11):1271–1277
Moses N, Wiggers J, Nicholas C, Cockburn J (2007) Development and psychometric analysis of the systemic lupus erythematosus needs questionnaire (SLENQ). Qual Life Res 16(3):461–466
Bombardier C, Gladman DD, Urowitz MB, Caron D, Chang CH (1992) Derivation of the SLEDAI. A disease activity index for lupus patients. The Committee on Prognosis Studies in SLE. Arthritis Rheum 35(6):630–640
Zandbelt MM, Welsing PM, van Gestel AM, van Riel PL (2001) Health Assessment Questionnaire modifications: is standardisation needed? Ann Rheum Dis 60(9):841–845
Milligan SE, Hom DL, Ballou SP, Persse LJ, Svilar GM, Coulton CJ (1993) An assessment of the Health Assessment Questionnaire functional ability index among women with systemic lupus erythematosus. J Rheumatol 20(6):972–976
Neville C, Fortin PR, Fitzcharles MA, Baron M, Abrahamowitz M, Du BR et al (1999) The needs of patients with arthritis: the patient’s perspective. Arthritis Care Res 12(2):85–95
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(3):440–446
Callahan LF, Cordray DS, Wells G, Pincus T (1996) Formal education and five-year mortality in rheumatoid arthritis: mediation by helplessness scale score. Arthritis Care Res 9(6):463–472
Sutcliffe N, Clarke AE, Gordon C, Farewell V, Isenberg DA (1999) The association of socio-economic status, race, psychosocial factors and outcome in patients with systemic lupus erythematosus. Rheumatology (Oxford) 38(11):1130–1137
Haviland MG, Morales LS, Dial TH, Pincus HA (2005) Race/ethnicity, socioeconomic status, and satisfaction with health care. Am J Med Qual 20(4):195–203
Ward RA (1990) Age and patterns of HMO satisfaction. J Aging Health 2(2):242–260
Rademakers J, Delnoij D, Nijman J, de Boer D (2012) Educational inequalities in patient-centred care: patient preferences and experiences. BMC Health Serv Res 12(1):261
Ross CK, Sinacore JM, Stiers W, Budiman-Mak E (1990) The role of expectations and preferences in health care satisfaction of patients with arthritis. Arthritis Care Res 3(2):92–98
Young SP, Henderson E, Cheseldine DL, Wilson AS, Skan J, Heaton S et al (2002) Development and assessment of a World Wide Web site for systemic lupus erythematosus patient information. Lupus 11(8):478–484
Albada A, van Dulmen S, Bensing JM, Ausems MG (2012) Effects of a pre-visit educational website on information recall and needs fulfilment in breast cancer genetic counselling, a randomized controlled trial. Breast Cancer Res 14(2):R37
Clarke AE, Petri MA, Manzi S, Isenberg DA, Gordon C, Senecal JL et al (1999) An international perspective on the well being and health care costs for patients with systemic lupus erythematosus. Tri-Nation Study Group. J Rheumatol 26(7):1500–1511
Doty MM, Fryer AK, Audet AM (2012) The role of care coordinators in improving care coordination: the patient’s perspective. Arch Intern Med 172(7):587–588
Disclosures
EJ Zirkzee: none, GM Steup-Beekman: none, AA Schouffoer: none, SM Henquet: none, MA Caljouw: none, TW Huizinga: none, TP Vliet Vlieland: none.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Zirkzee, E.J.M., Steup-Beekman, G.M., Schouffoer, A.A. et al. Health care in systemic lupus erythematosus (SLE): the patient’s perspective. Clin Rheumatol 33, 1279–1287 (2014). https://doi.org/10.1007/s10067-014-2595-1
Received:
Revised:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10067-014-2595-1