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

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. Electronic supplementary material The online version of this article (10.1186/s12913-019-4206-y) contains supplementary material, which is available to authorized users.

Patient-reported Satisfaction with Current Clinical Management of Systemic Lupus Erythematosus in Kazakhstan

“…The main finding of our study is the low rate of patient satisfaction (16.4%). This finding is very similar to that of Chinese colleagues, who reported on 32.38% satisfaction rate of SLE patients, which was influenced by the defects in patients' education on health-care system [20]. Clinical manifestations of SLE and quality of life also significantly correlated with patient satisfaction [21].…”

Medication adherence is influenced by resilience in patients with systemic lupus erythematosus

“…Self-reported adherence was assessed using the CQR, which has been validated in patients with rheumatic diseases and has shown good reliability and validity in SLE patients. 20–22 A Spanish language version has recently been adapted and validated. 23 The CQR consists of 19 items on taking medication, in which patients are asked about the degree of agreement with statements.…”

Quality of English‐language videos on YouTube as a source of information on systemic lupus erythematosus

“…Despite advancements in treatment, patients still suffer from various co‐morbidities, a lowered quality of life yet unchanged mortality rates, thus emphasizing the need to further optimize their medical care 1 . Patient education has been shown to help gain better control of the disease and one way to enhance that is via widely accessible internet platforms 2 . Searching the internet for SLE has been gaining popularity among SLE patients in recent years, which is not unexpected, given that the disease generally appears in young adulthood and in urban more than rural areas 3‐5 .…”