OBJECTIVE: To investigate the current status of self-management ability in patients with systemic lupus erythematosus (SLE), and to analyze the related factors affecting the self-management ability of SLE patients. METHODS: A total of 180 SLE patients who were selected from the outpatient department and ward of the Department of Rheumatology and Immunology of a Tertiary Hospital in Beijing from January 2024 to March 2024. General information questionnaire, SLE self-management ability assessment scale, general self-efficacy scale (GSES) and family concern index questionnaire (APGAR) were used for questionnaire investigation, so as to investigate the current status and related influencing factors of self-management ability in patients with SLE. RESULTS: A total of 170 questionnaires were effectively collected, and the total score of self-management ability was (90.94±14.26) points, of which 103 patients were 89-110 points, accounting for 60.6%; 60 patients were 67-88 points, accounting for 35.3%; 7 patients were 0-66 points, accounting for 4.1%; The results of univariate analysis showed that personal monthly income, follow-up frequency, family caring index, self-efficacy and SLE self-management ability score had statistical significance (P < 0.05). Spearman rank correlation analysis showed that family caring index, self-efficacy scores were positively correlated with the scores of various dimensions and the total score of SLE self-management scores (P < 0.001). Multivariate Logistic regression analysis showed that family caring index (OR=1.503, 95%CI=1.186-1.906), self-efficacy (OR=1.103, 95%CI=1.038-1.172), personal monthly income of 5 000-8 000 yuan/month (OR=0.120, 95%CI=0.022-0.645) and 1-2 weeks return frequency (OR=0.044, 95%CI=0.003-0.575) were significant influencing factors for SLE patients' self-management ability. CONCLUSION The results of this study indicate that patients with SLE have a good level of self-management ability. In the process of chronic disease management, medical staff should formulate detailed and layered intervention measures to further improve self-management ability with SLE patients, and at the same time, help SLE patients establish good family caring index and patient self-efficacy, which is conducive to improving self-management ability of SLE patients, so as to effectively promote disease management and improve the quality of life.
Humans ; Lupus Erythematosus, Systemic/psychology* ; Self-Management ; Self Efficacy ; Surveys and Questionnaires ; Female ; Male ; Income ; Self Care

Systemic lupus erythematosus (SLE) is the prototypic systemic autoimmune disease characterized by production of autoantibodies to various nuclear antigens and overexpression of genes regulated by IFN-I called IFN signature. Genetic studies on SLE patients and mutational analyses of mouse models demonstrate crucial roles of nucleic acid (NA) sensors in development of SLE. Although NA sensors are involved in induction of anti-microbial immune responses by recognizing microbial NAs, recognition of self NAs by NA sensors induces production of autoantibodies to NAs in B cells and production of IFN-I in plasmacytoid dendritic cells. Among various NA sensors, the endosomal RNA sensor TLR7 plays an essential role in development of SLE at least in mouse models. CD72 is an inhibitory B cell co-receptor containing an immunoreceptor tyrosine-based inhibition motif (ITIM) in the cytoplasmic region and a C-type lectin like-domain (CTLD) in the extracellular region. CD72 is known to regulate development of SLE because CD72 polymorphisms associate with SLE in both human and mice and CD72−/− mice develop relatively severe lupus-like disease. CD72 specifically recognizes the RNA-containing endogenous TLR7 ligand Sm/RNP by its extracellular CTLD, and inhibits B cell responses to Sm/RNP by ITIM-mediated signal inhibition. These findings indicate that CD72 inhibits development of SLE by suppressing TLR7-dependent B cell response to self NAs. CD72 is thus involved in discrimination of self-NAs from microbial NAs by specifically suppressing autoimmune responses to self-NAs.
Animals ; Antigens, Nuclear ; Autoantibodies ; Autoantigens ; Autoimmune Diseases ; Autoimmunity ; B-Lymphocytes ; Cytoplasm ; Dendritic Cells ; Discrimination (Psychology) ; Humans ; Immunoreceptor Tyrosine-Based Inhibition Motif ; Lectins, C-Type ; Lupus Erythematosus, Systemic ; Mice ; RNA

Systemic lupus erythematosus (SLE) predominantly affects women in their reproductive years and has a significant impact on childbearing. We investigated the influence of personal decision on family size among Korean women with SLE and factors that affect the decisions. A case-control study comparing childbearing history and decisions of 112 SLE patients and 135 controls was performed. Women with SLE participating in the Network for Lupus Clinical Research in South Korea and matching controls between ages of 18-45, who are/were married or living with a partner were included. Data regarding socio-demographics, reproductive history, and childbearing decisions were collected through a survey using a standardized questionnaire and medical record review. More women with SLE reported at least one pregnancy (85.7% vs. 71.9%, P = 0.009) or at least one live birth (85.7% vs. 71.9%, P = 0.003) compared with controls. Mean number of pregnancies was significantly higher (2.4 ± 1.6 vs. 1.4 ± 1.3, P < 0.001), and mean number of live births was significantly lower in women with SLE (1.2 ± 0.8 vs. 1.6 ± 0.8, P < 0.001). Significantly more women with SLE made the decision not to have children compared with controls (54.5% vs. 40.7%, P = 0.031), and health-related concerns were the major cause of the decision. Other socio-demographic factors did not influence the decision to limit childbearing in SLE women. The disease-related concerns had significant impact on family size and childbearing decisions among Korean women with SLE.
Adolescent ; Adult ; Asian Continental Ancestry Group ; Case-Control Studies ; Demography ; Family Characteristics ; Female ; Humans ; Live Birth ; Lupus Erythematosus, Systemic/*pathology/psychology ; Odds Ratio ; Pregnancy ; Pregnancy Complications ; Reproductive Behavior/*psychology ; Republic of Korea ; Surveys and Questionnaires ; Tertiary Care Centers ; Young Adult

Clinical Medicine ; Humans ; Lupus Erythematosus, Systemic ; complications ; psychology ; Mental Disorders ; etiology ; Psychiatry

OBJECTIVETo investigate the prevalence of suicidal ideation among systemic lupus erythematosus (SLE) patients and to assess the psychological susceptibility of suicidal ideation.

METHODS324 SLE patients in Hefei city were interviewed with questionnaires, including Eysenck Personality Questionnaire (EPQ) and Trait Coping Style Questionnaire (TCSQ) and self-made questionnaire to collect information on suicidal ideation, social-demographic characteristics, etc. T test was used to compare the scores of personality and coping styles with national psychological norms. These odds ratios (95%CI) of the two factors for suicidal ideation were calculated by logistic regression, adjusted to socio-demographic factors.

RESULTSCurrent suicidal ideation was present in 108(33.3%) of 324 SLE patients. The standard scores of neuroticism (49.81 ± 10.03, t = 15.327, P < 0.01) and psychoticism (49.84 ± 9.73, t = 3.142, P < 0.01) were both higher than norms (neuroticism: 41.27 ± 9.42; psychoticism: 48.14 ± 9.74). The standard score of extrovision and introvision (50.43 ± 9.90) was lower than norm (57.75 ± 8.26) (t = -13.317, P < 0.01). Both scores of positive coping (34.36 ± 7.86) and negative coping (28.87 ± 7.79) were higher than norms of female healthy group (PC: 29.32 ± 8.96, NC: 22.34 ± 7.47) (t values were 11.543 and 15.102, P values all < 0.01) and patients' group (PC: 29.15 ± 9.28, NC: 25.36 ± 8.42) (t values were 8.122 and 11.932, P values all < 0.01). After adjusting the social-demographic variables, neurotic personality (OR = 1.110, 95%CI: 1.072 - 1.149) and high level of negative coping (OR = 1.069, 95%CI: 1.030 - 1.109) were significantly correlated with suicidal ideation in SLE patients.

CONCLUSIONThe rate of suicidal ideation in SLE patients in China was a little higher. Neurotic personality and negative coping were the psychological susceptibility of suicidal ideation in SLE patients.

Adaptation, Psychological ; Adolescent ; Adult ; Aged ; Child ; China ; Disease Susceptibility ; Female ; Humans ; Lupus Erythematosus, Systemic ; psychology ; Male ; Middle Aged ; Risk Factors ; Suicidal Ideation ; Surveys and Questionnaires ; Young Adult

OBJECTIVETo evaluate the effectiveness of educational interventions in children with chronic illness and their parents.

METHODSFifty children with chronic illness and 75 parents participated in the study. Children who were hospitalized between August 2007 and January 2008 and their parents received educational sessions and those who were hospitalized between February and July 2007 and who did not receive the sessions served as the control group. The content of the educational sessions included knowledge of chronic disease, drugs and self-care, and coping skills. The knowledge level, stressors, coping strategies, and psychological conditions of children with chronic illness and their parents were evaluated before discharge and three months after discharge.

RESULTSAfter educational interventions, the knowledge levels of children and their parents increased and the stressors decreased significantly in the intervention group compared with those in the control group. The children's parents in the intervention group used more active coping strategies (understanding the medical situations through communication with medical staff) than those in the control group. The differences in the medication compliance of children between the two groups were not found.

CONCLUSIONSThe educational interventions may result in an improved knowledge level and decrease stressors in children and their parents, and improve stress coping strategies in parents. There is no evidence that the educational intervention can improve the psychosocial conditions of children and their parents.

Adolescent ; Adult ; Child ; Chronic Disease ; psychology ; Female ; Humans ; Lupus Erythematosus, Systemic ; psychology ; Male ; Parents ; psychology ; Patient Education as Topic

With improvements in mortality in systemic lupus erythematosus (SLE), the functional status of these patients, assessed using health-related quality of life (HRQoL) instruments, is increasingly being recognised as an important outcome measure in clinical research. Domains of HRQoL of particular importance to SLE patients include fatigue, ability to work, good health, independence, social and family life, learned helplessness (reflecting the unpredictability of lupus), pain and the home environment. The SF-36 currently appears to be the best available generic instrument for the assessment of HRQoL in SLE, and is likely to be complemented by several newly-developed disease-specific HRQoL instruments. It has been shown that SLE patients have poorer functional status than the general population, and that specific manifestations of SLE (disease activity, previous renal involvement and fibromyalgia) may influence HRQoL. HRQoL in SLE patients has been improved by (1) psycho-educational interventions including telephone counselling, a self-help course, group psychotherapy; (2) therapies including Riquent, belimumab, mycophenolate mofetil, dehydroepiandrosterone, oestrogen therapy and a cholesterol- lowering diet. Additional research is needed to identify strategies which can improve HRQoL in SLE patients.
Health Status Indicators ; Humans ; Lupus Erythematosus, Systemic ; psychology ; Outcome Assessment (Health Care) ; Quality of Life ; Sensitivity and Specificity

OBJECTIVE: The rheumatic disease is a chronic disease, which can result in a functional disability and impaired health-related quality of life (HRQOL). Recently, the concerns about the HRQOL have been increasing especially in chronic diseases, but there has been no report with Korean patients with rheumatic disease. The objective of this study is to assess HRQOL and the correlation among each measurement and to identify the predictors for HRQOL in Korean patients with rheumatic disease. METHODS: A cross-sectional study with 100 patients with rheumatoid arthritis (RA), 103 patients with osteoarthritis (OA), 111 patients with systemic lupus erythematosus (SLE), 104 patients with fibromyalgia (FM), 90 patients with ankylosing spondylitis (AS), and 228 healthy persons as control was done. We measured the HRQOL (with 36 item Short Form Health Survey (SF-36), EuroQol5 Dimensions (EQ-5D), time trade off (TTO), standard gamble (SG) method), the disease specific health state (with Korean Health Assessment Questionnaire (KHAQ) for RA, Korean Western Ontario and McMaster Universities (KWOMAC) for OA, SLE Disease Activity Index (SLEDAI) & Systemic Lupus International Collaborating Clinics (SLICC)/American College of Rheumatology (ACR) Damage Index (SDI) for SLE, Korean Fibromyalgia Impact Questionnaire (KFIQ) for FM, Korean Bath Ankylosing Spondylitis Functional Index (KBASFI) for AS), the psychosocial factors (with Centers for Epidemiologic Studies-Depression (CES-D), social support, social network, self-efficacy scale), and clinical features. We compared the means of each group by Student's t-test and ANOVA test, analyzed the correlation among HRQOL and other variables with Pearson and/or Spearman coefficient, and performed the multiple regression analysis with SF-36 as a dependent variable. RESULTS: There were significant differences in sociodemographic and clinical features among groups. Therefore these differences were compensated later in multiple regression analysis. The HRQOL of disease group was significantly lower than that of healthy control. Among disease groups, the SF-36 global score was highest in SLE and lowest in FM. The SF-36 physical component summary was highest in SLE and lowest in OA and FM. The SF-36 mental component summary was lowest in FM. The EQ-5D utility was highest in SLE and lowest in OA, RA, and FM. The EQ-5D visual analog scale was highest in SLE and lowest in OA, AS, and FM. The CES-D was highest in FM and the self-efficacy scale was lowest in FM. The social support and social network was highest in SLE and lowest in OA and FM. In correlation analysis, the SF-36 and EQ-5D were well correlated with each other, but SG and TTO were not. In general, the disease specific health state (except SLEDAI & SDI), CES-D, and self-efficacy scale were well correlated with SF-36 & EQ-5D. In multivariate models, in a point of view of 5 diseases as a whole, the statistically significant variables of SF-36 global were age, income, the disease specific health state, and self-efficacy scale. The statistically significant variables of SF-36 PCS were age, income, the disease specific health state, and self-efficacy scale, and the statistically significant variables of SF-36 MCS were age, the disease specific health state, social support, and self-efficacy scale. The disease type itself was a statistically significant variable with all SF-36 scores in multiple regression analysis. CONCLUSION: These results suggest that HRQOL in Korean patients with rheumatic disease is significantly lower than healthy control and there is a difference in HRQOL among disease types. Among variables, age, disease type, the disease specific health state, CES-D, self-efficacy were most constant meaningful variables correlated with HRQOL. Therefore, the efforts to improve HRQOL for Korean patients with rheumatic disease should be designed to improve the self-efficacy and to alleviate the depression in addition to conventional treatment. In addition, to define the more definite feature of HRQOL in Korean patients with rheumatic disease, the study with more and larger epidemiological controlled disease group and detailed variable adjustment should be done.
Arthritis, Rheumatoid ; Baths ; Chronic Disease ; Cross-Sectional Studies ; Depression ; Fibromyalgia ; Health Surveys ; Humans ; Lupus Erythematosus, Systemic ; Ontario ; Osteoarthritis ; Psychology ; Quality of Life* ; Surveys and Questionnaires ; Rheumatic Diseases* ; Rheumatology ; Spondylitis, Ankylosing ; Visual Analog Scale