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Published in: BMC Health Services Research 1/2019

Open Access 01-12-2019 | Systemic Lupus Erythematosus | Research article

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

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

Published in: BMC Health Services Research | Issue 1/2019

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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.
Appendix
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Literature
1.
go back to reference Mak A, Isenberg DA, Lau CS. Global trends, potential mechanisms and early detection of organ damage in SLE. Nat Rev Rheumatol. 2013;9(5):301–10.CrossRef Mak A, Isenberg DA, Lau CS. Global trends, potential mechanisms and early detection of organ damage in SLE. Nat Rev Rheumatol. 2013;9(5):301–10.CrossRef
2.
go back to reference 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):1269–74.CrossRef 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):1269–74.CrossRef
3.
go back to reference Chen L, Morris DL, Vyse TJ. Genetic advances in systemic lupus erythematosus: an update. Curr Opin Rheumatol. 2017;29(5):423–33.CrossRef Chen L, Morris DL, Vyse TJ. Genetic advances in systemic lupus erythematosus: an update. Curr Opin Rheumatol. 2017;29(5):423–33.CrossRef
4.
go back to reference 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.CrossRef 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.CrossRef
5.
go back to reference 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):301–13.CrossRef 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):301–13.CrossRef
6.
go back to reference 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):666–71.CrossRef 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):666–71.CrossRef
7.
go back to reference 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;11:1591–601.CrossRef 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;11:1591–601.CrossRef
8.
go back to reference 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):154–60.CrossRef 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):154–60.CrossRef
9.
go back to reference 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):667–77.CrossRef 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):667–77.CrossRef
10.
go back to reference 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):1248–56.CrossRef 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):1248–56.CrossRef
11.
go back to reference 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):630–40.CrossRef 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):630–40.CrossRef
12.
go back to reference 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):786–9.CrossRef 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):786–9.CrossRef
13.
go back to reference 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):373–6.PubMed 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):373–6.PubMed
14.
go back to reference 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):817–8.CrossRef 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):817–8.CrossRef
15.
go back to reference Zhu GH, Wang YZ, Tong ZW. Reliability and validity of Chinese compliance questionnaire for rheumatology. Clin Rheumatol. 2018;37(3):817–8.CrossRef Zhu GH, Wang YZ, Tong ZW. Reliability and validity of Chinese compliance questionnaire for rheumatology. Clin Rheumatol. 2018;37(3):817–8.CrossRef
16.
go back to reference 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):2469–75.PubMed 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):2469–75.PubMed
17.
go back to reference 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):690–7.CrossRef 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):690–7.CrossRef
18.
go back to reference Alhewiti A. Adherence to long-term therapies and beliefs about medications. Int J Family Med. 2014;2014:479596.CrossRef Alhewiti A. Adherence to long-term therapies and beliefs about medications. Int J Family Med. 2014;2014:479596.CrossRef
19.
go back to reference 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.CrossRef 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.CrossRef
20.
go back to reference 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):219–28.CrossRef 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):219–28.CrossRef
21.
go back to reference 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):409–13.CrossRef 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):409–13.CrossRef
22.
go back to reference 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.CrossRef 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.CrossRef
23.
go back to reference 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.CrossRef 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.CrossRef
24.
go back to reference 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):389–95.PubMed 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):389–95.PubMed
25.
go back to reference 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):677–87.CrossRef 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):677–87.CrossRef
26.
go back to reference 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.CrossRef 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.CrossRef
27.
go back to reference 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):864–9.CrossRef 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):864–9.CrossRef
28.
go back to reference 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. 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.
29.
go back to reference 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):1423–31.CrossRef 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):1423–31.CrossRef
30.
go back to reference 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):1038–45.CrossRef 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):1038–45.CrossRef
31.
go back to reference 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):342–50. 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):342–50.
32.
go back to reference 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.CrossRef 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.CrossRef
33.
go back to reference 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.CrossRef 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.CrossRef
34.
go back to reference 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):356–61.CrossRef 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):356–61.CrossRef
35.
go back to reference 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):135–40.CrossRef 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):135–40.CrossRef
36.
go back to reference 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.CrossRef 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.CrossRef
37.
go back to reference 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):202–8.CrossRef 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):202–8.CrossRef
38.
go back to reference 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):266–71.CrossRef 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):266–71.CrossRef
39.
go back to reference 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. https://doi.org/10.1002/acr23721. 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. https://​doi.​org/​10.​1002/​acr23721.
Metadata
Title
Lack of patient education is risk factor of disease flare in patients with systemic lupus erythematosus in China
Authors
Le Zhang
Wei Luan
Shikai Geng
Shuang Ye
Xiaodong Wang
Liping Qian
Yang Ding
Ting Li
Anli Jiang
Publication date
01-12-2019
Publisher
BioMed Central
Published in
BMC Health Services Research / Issue 1/2019
Electronic ISSN: 1472-6963
DOI
https://doi.org/10.1186/s12913-019-4206-y

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