Lack of patient education is risk factor of disease flare in patients with systemic lupus erythematosus in China

Le Zhang, Wei Luan, Shikai Geng, Shuang Ye, Xiaodong Wang, Liping Qian, Yang Ding, Ting Li, Anli Jiang, Le Zhang, Wei Luan, Shikai Geng, Shuang Ye, Xiaodong Wang, Liping Qian, Yang Ding, Ting Li, Anli Jiang

Abstract

Background: To explore the inadequacies of health service and its impact on clinical outcomes of patients with systemic lupus erythematosus (SLE) in China.

Methods: A total of 210 SLE patients were randomly recruited between January 2017 and January 2018. Each patient received self-report questionnaires to assess medication adherence [Compliance Questionnaire for Rheumatology (CQR)], beliefs about medicines [Beliefs about Medicines Questionnaire (BMQ)] and satisfaction about medicine information [the Satisfaction with Information about Medicines Scale (SIMS)]. Associations between SLE disease activity index (SLEDAI-2 K) and observed factors were analyzed by multiple logistic regression.

Results: Based on CQR, only 28.10% patients were adherent. The score of BMQ was 2.85 ± 5.42, and merely 32.38% patients were satisfied with the information about their prescribed medicines. Disease activity was associated with SIMS, EuroQol five-dimensions [EQ5D], Systemic Lupus International Collaborating Clinics (SLICC), depression, use of NSAID (P ≤ 0.05). Remission of disease was positively correlated with SIMS (OR = 0.16, 95% CI: [0.06, 0.40]), and BMQ (OR = 0.64, 95%CI: [0.43, 0.94]).

Conclusion: In this study, the scores of BMQ and SIMS were low, implying defects in the patient education of health service system, which led to disease flare in Chinese SLE patients.

Trial registration: ClinicalTrials.gov ID: NCT03024307 . Registered January 18, 2017.

Keywords: Beliefs about medicines; Patient education and consulting; Satisfaction with medicines information; Systemic lupus erythematosus disease activity index.

Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Significance of demographic and clinical characteristics to SLEDAI. *P < 0.05. **P < 0.01. ***P < 0.001

References

    1. Mak A, Isenberg DA, Lau CS. Global trends, potential mechanisms and early detection of organ damage in SLE. Nat Rev Rheumatol. 2013;9(5):301–310. doi: 10.1038/nrrheum.2012.208.
    1. Mosca M, Tani C, Aringer M, Bombardieri S, Boumpas D, Brey R, Cervera R, Doria A, Jayne D, Khamashta MA, et al. European league against rheumatism recommendations for monitoring patients with systemic lupus erythematosus in clinical practice and in observational studies. Ann Rheum Dis. 2010;69(7):1269–1274. doi: 10.1136/ard.2009.117200.
    1. Chen L, Morris DL, Vyse TJ. Genetic advances in systemic lupus erythematosus: an update. Curr Opin Rheumatol. 2017;29(5):423–433. doi: 10.1097/BOR.0000000000000411.
    1. Oliveira-Santos M. Erratum to: effectiveness of pharmaceutical care for drug treatment adherence in patients with systemic lupus erythematosus in Rio de Janeiro, Brazil: study protocol for a randomized controlled trial. Trials. 2017;18(1):96. doi: 10.1186/s13063-016-1766-6.
    1. Silva CA, Aikawa NE, Pereira RM, Campos LM. Management considerations for childhood-onset systemic lupus erythematosus patients and implications on therapy. Expert Rev Clin Immunol. 2016;12(3):301–313. doi: 10.1586/1744666X.2016.1123621.
    1. Lawson EF, Trupin L, Yelin EH, Yazdany J. Reasons for failure to receive pneumococcal and influenza vaccinations among immunosuppressed patients with systemic lupus erythematosus. Semin Arthritis Rheum. 2015;44(6):666–671. doi: 10.1016/j.semarthrit.2015.01.002.
    1. Zhang L, Lu GH, Ye S, Wu B, Shen Y, Li T. Treatment adherence and disease burden of individuals with rheumatic diseases admitted as outpatients to a large rheumatology center in Shanghai, China. Patient Prefer Adherence. 2017;11:1591–1601. doi: 10.2147/PPA.S144624.
    1. Doria A, Amoura Z, Cervera R, Khamastha MA, Schneider M, Richter J, Guillemin F, Kobelt G, Maurel F, Garofano A, et al. Annual direct medical cost of active systemic lupus erythematosus in five European countries. Ann Rheum Dis. 2014;73(1):154–160. doi: 10.1136/annrheumdis-2012-202443.
    1. Garris C, Jhingran P, Bass D, Engel-Nitz NM, Riedel A, Dennis G. Healthcare utilization and cost of systemic lupus erythematosus in a US managed care health plan. J Med Econ. 2013;16(5):667–677. doi: 10.3111/13696998.2013.778270.
    1. Jonsen A, Bengtsson AA, Hjalte F, Petersson IF, Willim M, Nived O. Total cost and cost predictors in systemic lupus erythematosus - 8-years follow-up of a Swedish inception cohort. Lupus. 2015;24(12):1248–1256. doi: 10.1177/0961203315584812.
    1. Bombardier C, Gladman DD, Urowitz MB, Caron D, Chang CH. Derivation of the SLEDAI. A disease activity index for lupus patients. The committee on prognosis studies in SLE. Arthritis Rheum. 1992;35(6):630–640. doi: 10.1002/art.1780350606.
    1. Butler JA, Peveler RC, Roderick P, Horne R, Mason JC. Measuring compliance with drug regimens after renal transplantation: comparison of self-report and clinician rating with electronic monitoring. Transplantation. 2004;77(5):786–789. doi: 10.1097/01.TP.0000110412.20050.36.
    1. Gladman DD, Goldsmith CH, Urowitz MB, Bacon P, Fortin P, Ginzler E, Gordon C, Hanly JG, Isenberg DA, Petri M, et al. The systemic lupus international collaborating clinics/American College of Rheumatology (SLICC/ACR) damage index for systemic lupus erythematosus international comparison. J Rheumatol. 2000;27(2):373–376.
    1. Flynn A, Gilhooley E, O'Shea F, Wynne B. The use of SLICC and ACR criteria to correctly label patients with cutaneous lupus and systemic lupus erythematosus. Clin Rheumatol. 2018;37(3):817–818. doi: 10.1007/s10067-018-3999-0.
    1. Zhu GH, Wang YZ, Tong ZW. Reliability and validity of Chinese compliance questionnaire for rheumatology. Clin Rheumatol. 2018;37(3):817–818. doi: 10.1007/s10067-017-3850-z.
    1. de Klerk E, van der Heijde D, Landewe R, van der Tempel H, van der Linden S. The compliance-questionnaire-rheumatology compared with electronic medication event monitoring: a validation study. J Rheumatol. 2003;30(11):2469–2475.
    1. Kumar K, Gordon C, Toescu V, Buckley CD, Horne R, Nightingale PG, Raza K. Beliefs about medicines in patients with rheumatoid arthritis and systemic lupus erythematosus: a comparison between patients of south Asian and white British origin. Rheumatology (Oxford) 2008;47(5):690–697. doi: 10.1093/rheumatology/ken050.
    1. Alhewiti A. Adherence to long-term therapies and beliefs about medications. Int J Family Med. 2014;2014:479596. doi: 10.1155/2014/479596.
    1. Menckeberg TT, Bouvy ML, Bracke M, Kaptein AA, Leufkens HG, Raaijmakers JA, Horne R. Beliefs about medicines predict refill adherence to inhaled corticosteroids. J Psychosom Res. 2008;64(1):47–54. doi: 10.1016/j.jpsychores.2007.07.016.
    1. Boons C, Timmers L, van Schoor NM, Swart EL, Hendrikse NH, Janssen J, Hugtenburg JG. Patient satisfaction with information on oral anticancer agent use. Cancer Med. 2018;7(1):219–228. doi: 10.1002/cam4.1239.
    1. Mahler C, Hermann K, Horne R, Jank S, Haefeli WE, Szecsenyi J. Patients’ beliefs about medicines in a primary care setting in Germany. J Eval Clin Pract. 2012;18(2):409–413. doi: 10.1111/j.1365-2753.2010.01589.x.
    1. Liu GG, Wu H, Li M, Gao C, Luo N. Chinese time trade-off values for EQ-5D health states. Value Health. 2014;17(5):597–604. doi: 10.1016/j.jval.2014.05.007.
    1. Jorgensen TS, Turesson C, Kapetanovic M, Englund M, Turkiewicz A, Christensen R, Bliddal H, Geborek P, Kristensen LE. EQ-5D utility, response and drug survival in rheumatoid arthritis patients on biologic monotherapy: a prospective observational study of patients registered in the south Swedish SSATG registry. PLoS One. 2017;12(2):e0169946. doi: 10.1371/journal.pone.0169946.
    1. Mok CC, Chan KL, Ho LY. Association of depressive/anxiety symptoms with quality of life and work ability in patients with systemic lupus erythematosus. Clin Exp Rheumatol. 2016;34(3):389–395.
    1. Little J, Parker B, Lunt M, Hanly JG, Urowitz MB, Clarke AE, Romero-Diaz J, Gordon C, Bae SC, Bernatsky S, et al. Glucocorticoid use and factors associated with variability in this use in the systemic lupus international collaborating clinics inception cohort. Rheumatology (Oxford) 2018;57(4):677–687. doi: 10.1093/rheumatology/kex444.
    1. Ritschl V, Lackner A, Bostrom C, Mosor E, Lehner M, Omara M, Ramos R, Studenic P, Smolen JS, Stamm TA. I do not want to suppress the natural process of inflammation: new insights on factors associated with non-adherence in rheumatoid arthritis. Arthritis Res Ther. 2018;20(1):234. doi: 10.1186/s13075-018-1732-7.
    1. Wang Z, Li M, Wang Y, Xu D, Wang Q, Zhang S, Zhao J, Su J, Wu Q, Shi Q, et al. Long-term mortality and morbidity of patients with systemic lupus erythematosus: a single-center cohort study in China. Lupus. 2018;27(5):864–869. doi: 10.1177/0961203317751852.
    1. Romero-Diaz J, Isenberg D, Ramsey-Goldman R. Measures of adult systemic lupus erythematosus: updated version of British Isles lupus assessment group (BILAG 2004), European consensus lupus activity measurements (ECLAM), systemic lupus activity measure, revised (SLAM-R), systemic lupus activity questionnaire for population studies (SLAQ), systemic lupus erythematosus disease activity index 2000 (SLEDAI-2K), and systemic lupus international collaborating clinics/American College of Rheumatology Damage Index (SDI). Arthritis Care Res (Hoboken). 2011;(Suppl 11):S37–46.
    1. Kelly M, McCarthy S, Sahm LJ. Knowledge, attitudes and beliefs of patients and carers regarding medication adherence: a review of qualitative literature. Eur J Clin Pharmacol. 2014;70(12):1423–1431. doi: 10.1007/s00228-014-1761-3.
    1. Beusterien K, Bell JA, Grinspan J, Utset TO. Kan H, Narayanan S. Physician-patient interactions and outcomes in systemic lupus erythematosus (SLE): a conceptual model. Lupus. 2013;22(10):1038–1045. doi: 10.1177/0961203313499958.
    1. Daleboudt GM, Broadbent E, McQueen F, Kaptein AA. Intentional and unintentional treatment nonadherence in patients with systemic lupus erythematosus. Arthritis Care Res(Hoboken) 2011;63(3):342–350.
    1. Kumar K, Raza K, Nightingale P, Horne R, Chapman S, Greenfield S, Gill P. Determinants of adherence to disease modifying anti-rheumatic drugs in white British and south Asian patients with rheumatoid arthritis: a cross sectional study. BMC Musculoskelet Disord. 2015;16:396. doi: 10.1186/s12891-015-0831-8.
    1. Fischer W, Brandstetter S, Brandl M, Finger T, Bohmer MM, Pfeifer M, Apfelbacher C. Specific, but not general beliefs about medicines are associated with medication adherence in patients with COPD, but not asthma: cohort study in a population of people with chronic pulmonary disease. J Psychosom Res. 2018;107:46–52. doi: 10.1016/j.jpsychores.2018.02.004.
    1. Zwikker HE, van den Ende CH, van Lankveld WG, den Broeder AA, van den Hoogen FH, van de Mosselaar B, van Dulmen S, van den Bemt BJ. Effectiveness of a group-based intervention to change medication beliefs and improve medication adherence in patients with rheumatoid arthritis: a randomized controlled trial. Patient Educ Couns. 2014;94(3):356–361. doi: 10.1016/j.pec.2013.12.002.
    1. Horne R, Hankins M, Jenkins R. The satisfaction with information about medicines scale (SIMS): a new measurement tool for audit and research. Qual Health Care. 2001;10(3):135–140. doi: 10.1136/qhc.0100135.
    1. Van de Steeg-van Gompel CH, Wensing M, De Smet PA. Implementation of patient education at first and second dispensing of statins in Dutch community pharmacies: the sequel of a cluster randomized trial. BMC Health Serv Res. 2011;11:313. doi: 10.1186/1472-6963-11-313.
    1. Kesselheim AS, Misono AS, Shrank WH, Greene JA, Doherty M, Avorn J, Choudhry NK. Variations in pill appearance of antiepileptic drugs and the risk of nonadherence. JAMA Internal Med. 2013;173(3):202–208. doi: 10.1001/2013.jamainternmed.997.
    1. Chambers SA, Raine R, Rahman A, Isenberg D. Why do patients with systemic lupus erythematosus take or fail to take their prescribed medications? A qualitative study in a UK cohort. Rheumatology (Oxford) 2009;48(3):266–271. doi: 10.1093/rheumatology/ken479.
    1. Feldman CH, Costenbader KH, Solomon DH, Subramanian SV, Kawachi I. Area-level predictors of medication nonadherence among U.S. Medicaid beneficiaries with lupus: a multilevel study. Arthritis Car Res(Hoboken). 2018. 10.1002/acr23721.

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