Exploring the quality of life and comorbidity impact among patients with systemic lupus erythematosus in Saudi Arabia.

OBJECTIVES: To explore the quality of life (QoL) of patients with systemic lupus erythematosus (SLE) and the factors affecting it. METHODS: In this cross-sectional study, 269 patients diagnosed with SLE from multiple centers across different regions of Saudi Arabia were included. We used the LupusPRO1.8 QoL assessment tool. Additionally, comprehensive data regarding patient demographics, disease features, and associated comorbidities were collected for analysis. RESULTS: The overall mean QoL score was 57.71±11.97, with the median value (interquartile range [IQR]) of 56.82 (48.62-66.65). The mean health-related QoL (HRQoL) score was 57.09±18.81, with the median (IQR) of 55.63 (44.04-70.19). Among HRQoL domains, the emotional health domain had the lowest score (44.67±30.00, median: 41.7 [16.7-66.7]). The second and third lowest scores were for fatigue (46.24±29.18, median: 43.8 [25-68.8]) and pain (48.65±30.38, median: 50 [25-71.9]). Regarding non-HRQoL, the mean score was 58.32±15.52 and median (IQR) score was 58.85 (48.18-70.83). The desires-goals domain had the lowest score (45.79±31.41), with the median value of 43.8 (21.9-68.8). The presence of comorbidities was the only factor affecting the QoL of patients with SLE. CONCLUSION: Our findings indicate that patients with SLE have worse overall QoL, which includes both HRQoL and non-HRQoL domains. Furthermore, the presence of comorbidities was the only factor that influenced the QoL of lupus patients.

Factors Associated with Psychosomatic Disorders Among Systemic Lupus Erythematosus (SLE) Patients During the Coronavirus Disease 2019 (COVID-19) Pandemic.

BACKGROUND:  The COVID-19 pandemic has affected physical and mental health. SLE patients are prone to psychosomatic disorders which can decrease their quality of life. This study aimed to determine the factors associated with psychosomatic disorders among SLE patients during the COVID-19 pandemic. Methods: This was a cross-sectional study of adult female SLE patients from the outpatient clinic of Cipto Mangunkusumo Hospital, Jakarta. Data regarding psychosomatic disorders were collected using SCL-90 questionnaires, and data on demographic factors, perception of COVID-19 conditions, perception of stress, psychosocial stressors, disease activity (MEX-SLEDAI), and treatment were also collected. Bivariate analysis for categorical data was conducted using the Chi-square test. Variables with a p-value <0.25 were further analyzed with logistic regression, and p-values <0.05 were considered significant. Meanwhile, data per domain were analyzed using the Mann-Whitney test with p-values < 0.05 being considered significant. Results: There were 200 female SLE patients recruited. More than half of the subjects (54%) experienced psychosomatic disorders. From multivariate analysis, high educational levels, moderate and high psychosocial stressors, and very severe disease activity levels were found to be significantly associated with the occurrence of psychosomatic disorders in SLE patients during the COVID-19 pandemic. CONCLUSION: Education level, psychosocial stressors, and disease activity level were found to be significantly associated with the occurrence of psychosomatic disorders in SLE patients during the COVID-19 pandemic.

Efficacy of psychological interventions to reduce anxiety and depression in patients with lupus. A systematic review and meta-analysis.

The presence of anxiety and depression symptoms in patients with lupus is common, and some research reports that psychological interventions can reduce them, therefore we conducted a systematic review and meta-analysis of the efficacy of psychological interventions in adults with systemic lupus erythematosus. Randomized and non-randomized clinical trials with adult population diagnosed with lupus, treated with psychological intervention, and compared with similar groups were selected. Several databases were searched in July 2023. Fourteen studies were included in the meta-analysis, with moderate effect sizes for anxiety and depression in group intervention modalities. Factors such as percentage of sample with lupus, gender, medication, and interventions with relaxation components influenced the results. Group psychological intervention programs are effective in reducing symptoms in patients with lupus, although further research on treatment modulating variables is needed.

Improving routine mental health screening for depression and anxiety in a paediatric lupus clinic: a quality improvement initiative for enhanced mental healthcare.

BACKGROUND: Mental health (MH) conditions are prevalent in adolescents with childhood-onset SLE (cSLE). Early identification is crucial in preventing poor patient outcomes; however, MH screening rates remain low. LOCAL PROBLEM: From July 2021-January 2022, only 15% of adolescents in a paediatric tertiary care cSLE clinic were being screened for depression and anxiety. By November 2023, we aimed to increase the percentage of patients with cSLE (≥12-18 years) screened for depression (Patient Health Questionnaire: PHQ-9) and anxiety (Generalised Anxiety Disorder-7: GAD-7) from 15% to 80%. METHODS: This quality improvement project employed the Model for Improvement framework. Stakeholders included the clinic team, patients and families, and MH providers. Statistical process control charts were used to analyse the outcome measure for percentage of screened patients with cSLE. Patient and caregiver satisfaction surveys were conducted at baseline and after screening as a balancing measure. INTERVENTIONS: MH screening workflow with a referral algorithm was developed with stakeholders. Additional interventions included two MH training workshops for healthcare providers and a preclinic reminder of eligible patients for screening. RESULTS: Over 21 months, 146 patients with cSLE completed 270 MH screens, increasing the screening rate from 15%, peaking at 100%, to a median of 56%. Sixty-six individuals (45%) reported symptoms of depression and/or anxiety on their initial screen. Of 270 screens, 44 individuals (17%) reported moderate to severe symptoms meeting the screening workflow criteria for referral to a MH service; 10% of patients screened were referred and seen by the MH service within 2-12 weeks. Patients and caregivers reported satisfaction with the MH screening process and quality of MH follow-up. CONCLUSION: Despite not sustainably meeting the target, MH screening rates increased in the cSLE clinic by nearly fourfold, demonstrating feasibility and acceptability. Patients expressed satisfaction with their mental health follow-up, emphasising its importance in their care.

Topological structural characteristics in patients with systemic lupus erythematosus with and without neuropsychiatric symptoms.

PURPOSE: This study investigated the topological structural characteristics of systemic lupus erythematosus (SLE) with and without neuropsychiatric symptoms (NPSLE and non-NPSLE), and explore their clinical implications. METHODS: We prospectively recruited 50 patients with SLE (21 non-NPSLE and 29 NPSLE) and 32 age-matched healthy controls (HCs), using MRI diffusion tensor imaging. Individual structural networks were constructed using fibre numbers between brain areas as edge weights. Global metrics (eg, small-worldness, global efficiency) and local network properties (eg, degree centrality, nodal efficiency) were computed. Group comparisons of network characteristics were conducted. Clinical correlations were assessed using partial correlation, and differentiation between non-NPSLE and NPSLE was performed using support vector classification. RESULTS: Patients with oth non-NPSLE and NPSLE exhibited significant global and local topological alterations compared with HCs. These changes were more pronounced in NPSLE, particularly affecting the default mode and sensorimotor networks. Topological changes in patients with SLE correlated with lesion burdens and clinical parameters such as disease duration and the systemic lupus international collaborating clinics damage index. The identified topological features enabled accurate differentiation between non-NPSLE and NPSLE with 87% accuracy. CONCLUSION: Structural networks in patients SLE may be altered at both global and local levels, with more pronounced changes observed in NPSLE, notably affecting the default mode and sensorimotor networks. These alterations show promise as biomarkers for clinical diagnosis.

Psychometric properties evaluation of the Persian version of the self-report outcome scale for lupus disease Lupus_PRO version 1.7.

PURPOSE: Systemic Lupus Erythematosus (SLE) significantly affects both the quality of life related to health and non-health aspects. This study aims to evaluate the psychometric properties of the Persian version of the Lupus_PRO questionnaire, version 1.7. The questionnaire serves as a specific self-report outcome scale for assessing the treatment outcomes of Lupus disease. METHODS: The Lupus_PRO questionnaire, version 1.7, was translated into Persian using the standard forward-backward method. After being completed by 218 patients with Lupus, the psychometric properties of the instrument were examined. The Convergent and Discriminant Validity of the scale were assessed using Average Variance Extracted and Cross Loadings, respectively. The construct validity of the questionnaire was also evaluated through Confirmatory Factor Analysis (CFA). Cronbach's alpha was calculated to assess the reliability of the questionnaire dimensions. FINDINGS: Out of the 218 patients with lupus who participated in the current study, 13 (6%) were male, and 205 (94%) were female. The mean (SD) age of participants was 40.29 (10.94) years. The Average Variance Extracted (AVE) for HRQOL and Non-HRQOL constructs, except for the Coping and Cognition dimension, was greater than 0.50, indicating satisfactory convergent validity. The interdimensional correlation coefficient (Discriminant Validity) for each dimension with other questionnaire dimensions was less than 0.10, indicating that the questionnaire has good convergent and discriminant validity. Additionally, the results of the Confirmatory Factor Analysis (CFA) indicated that the questionnaire was a suitable fit. In terms of reliability, Cronbach's alpha for the various questionnaire dimensions ranged from 0.51 to 0.91, indicating good internal consistency. CONCLUSION: The Persian version of the Lupus_PRO questionnaire, version 1.7, demonstrates acceptable validity and reliability in the Iranian population. This instrument can effectively measure various aspects of the quality of life in patients with lupus.

Cognitive impairment in a Colombian cohort of patients with systemic lupus erythematosus: A cross-sectional study.

CONTEXT: Cognitive deficits are neuropsychiatric syndromes associated with systemic lupus erythematosus. In our context, there are no data on the frequency of cognitive deficit as a manifestation of neuropsychiatric SLE or the associated conditions. OBJECTIVE: To define determinants of cognitive deficit in a cohort of Colombian patients with SLE attending a third-level hospital. METHODS AND PATIENTS: This descriptive cross-sectional study included patients with SLE, explored the presence of cognitive impairment through screening testing using the Montreal Cognitive Assessment (MoCA test), and diagnostic confirmation with a specific neuropsychological test battery recommended by the American College of Rheumatology. Quality of life was assessed using the LupusCol questionnaire and depression using the Beck Depression Inventory. RESULTS: Most patients were women, with a median age of 37 years (IQR, 28.0 - 46.7). Most patients had a level of higher education or technical education. Fifty-nine (62.9%) patients presented with a normal MoCA test result ≥26 points, and 35 (37.1%) patients with a score <26 points that were considered abnormal. The comprehensive neuropsychological test battery was applied to 31 patients (33.0%) with an abnormal MoCA test. Forty-one patients (48.8%) had some degree of depression. The median loss of quality of life was 21.03% (IQR 10.2 - 40.3). 19 patients (20%) presented some degree of cognitive deficit, 15 (15.95% of the total sample) had cognitive impairment, and 4 (4.25%) had cognitive decline. In a logistic regression analysis using data from patients undergoing specific tests, variables related to cognitive deterioration were found to be associated with a lower quality of life, showing an adjusted odds ratio of 1.05 (CI 1.01-0.09). No association was demonstrated with SLEDAI, prednisolone use, cyclophosphamide use, and the presence of depression. CONCLUSION: In this study, it was found in 16% of patients evaluated with the complete neuropsychological test battery and in 37% with the MoCA screening test. Our results suggest that it is crucial to implement strategies to assess cognitive deficit, depression, and quality of life in the consultation of patients with SLE and to raise awareness among health providers who care for patients with lupus about their presence and impact.

Establishing minimal clinically important differences for the quality of life scale QLICD-SLE for patients with systemic lupus erythematosus based on ROC curve.

The minimal clinically important difference (MCID) is an important concept with big appeal in a field struggling to interpret quality of life (QOL) and other patient-reported outcomes (PRO), is also a bridge between statistics and clinical medicine. This study uses the ROC curve to formulate the MCID value of the Quality of Life Instruments for Chronic Diseases of Systemic lupus erythematosus (QLICD-SLE V2.0) scale. Using the representative item "In general, would you say your health is" of the MOS item short form health survey(SF-36) as an anchor, the questionnaire of QLICD-SLE V2.0 and the anchor item were used to investigate the patients on the first day of hospitalization, and the day before the patient was discharged. 279 patients with lupus erythematosus were participated in this longitudinal follow-up study. The ROC curve was constructed by using the classification based on the anchor item as the gold standard and the difference score of the scale as the test variable. The cut-off point corresponding to the maximum value of the Youden index in the ROC curve is taken as the minimum clinical importance difference (MCID) value of the QLICD-SLE (V2.0) scale. The Results showed that the MCID of physical domain, psychological domain, social domain, general module, specific module and QLICD-SLE (V2.0) total scale are 8.3, 2.3, 2.5, 2.7, 9.2 and 3.2, respectively. Area under the ROC curve of QLICD-SLE (V2.0) is 0.898, P (Area = 0.5) < 0.001, the sensitivity is 100%, the specificity is 66.9%. It concluded that if the total scores after treatments changes at least 3.2 points positively, the treatment intervention can be considered as clinically significant. It is more convincing to use the corresponding cut-off point as the MCID for ROC curve method can visualize the sensitivity and specificity.

VPS13C and STING expression in neuropsychiatric systemic lupus erythematosus: unveiling an unbreached territory.

OBJECTIVES: To measure the expression level of the vacuolar protein sorting 13 (VPS13) gene and stimulator of interferon genes (STING) in patients with SLE with and without reported neuropsychiatric symptoms to establish their possible role in the pathogenesis of neuropsychiatric SLE (NPSLE). METHODS: This study included 100 subjects: 50 patients diagnosed with SLE and 50 age-matched and sex-matched healthy participants as the control group. The patients with SLE were further subdivided into NPSLE and non-NPSLE groups. All the subjects underwent rheumatological, neurological and psychological evaluation, MRI, VPS13C gene and STING expression assessment via quantitative real-time PCR. RESULTS: Seventy-eight per cent of the SLE group were classified as non-NPSLE, and 22% were classified as NPSLE. Positive MRI results were found in 55% of the patients with NPSLE and 7.7% of the patients without NPSLE.VPS13C expression levels were decreased in the patients with SLE compared with the control (p<0.001), while STING expression levels showed higher levels in the patients in comparison with the control (p<0.001). Both markers showed significant differences between the MRI-positive and MRI-negative groups.At a cut-off value of 0.225 for the VPS13C assessment and a cut-off value of 3.15 for STING expression, both markers were able to distinguish patients with NPSLE from those who were non-NPSLE; however, VPS13C performed better. CONCLUSION: The VPS13C expression levels were decreased in patients with NPSLE compared with patients without NPSLE, while STING expression levels showed higher levels in NPSLE. Both were associated with the MRI findings. To distinguish patients with NPSLE from those without it, the VPS13C assessment performed better.

The experience and implications of pain in systemic lupus erythematosus: A qualitative interview study focusing on the patient's perspective.

BACKGROUND: Pain is one of the most frequently reported symptoms and often one of the first subjective symptoms in patients with systemic lupus erythematosus (SLE). A previous study indicated that most patients with SLE reported low levels of SLE-related pain. However, a subgroup of patients reported high levels of pain ≥40 mm (0-100 mm) and had a substantial symptom burden in terms of fatigue, anxiety, depression, and reduced health-related quality of life. Thus, there is a need to elucidate the implications of high levels of pain in everyday life. AIM: This study explored the patient's experiences and implications of SLE-related pain in daily life and the support requested from healthcare providers. METHOD: A total of 20 patients, previously reported high levels of SLE-related pain intensity measuring ≥40 mm (0-100 mm) in a research context at one or two occasions participated in individual semi-structured interviews, which were transcribed and analysed with content analysis. RESULTS: The interviews revealed four main categories and 13 generic categories. SLE-associated pain was described by its multifaceted nature, exhibiting longstanding, unpredictable, migrating, and various physical sensations. The pain entailed multidimensional consequences, restricting everyday life by interfering with roles and relationships and causing various emotions, including existential thoughts. The informants used comprehensive strategies to deal with the pain, including their inner resources, support from family and significant others, and pharmaceuticals and relieving treatments. They expressed the need for security and acknowledgement, which involved individualized support and accessibility of healthcare. CONCLUSION: This study provides comprehensive insights into the nature and multifaceted impact of SLE-related pain in different dimensions of the informants' daily lives. Except for medications the informants used several strategies, including their inner resources and support from family and others, to manage the pain. Support requested from healthcare providers by the informants included understanding, compassion, individualized care and accessibility.

Impact of perception of illness on quality of life in juvenile systemic lupus erythematosus.

OBJECTIVE: Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that affects multiple organs, notably the skin, joints, and kidneys. The primary goal in managing SLE is to enhance patients' quality of life (QoL). Illness perception can influence QoL in patients with chronic disease. We assessed illness perception in juvenile SLE (jSLE) patients and its effect on patient's and parental QoL. METHOD: Patients diagnosed with jSLE according to the SLICC 2012 criteria between January and November 2023 were included. Patients' illness perceptions were gaged using the brief illness perception questionnaire (B-IPQ), while patient's and parental QoL were evaluated using PedsQL and WHOQOL- BREF, respectively. RESULTS: The study comprised 32 patients and 32 parents, predominantly female (78.1%). Musculoskeletal involvement was the most common (65.6%), followed by mucocutaneous (59.4%), renal, and hematological involvement (50% each). Neuropsychiatric involvement was absent. The median SLEDAI-2K score at the last outpatient clinic visit, which was documented in the patient's file was 2 (0-18) and was not correlated with the B-IPQ score (r = 0.121, p = .51). A significant negative correlation was found between B-IPQ and patient QoL, indicating poorer QoL in patients with negative illness perceptions (r = -0.576, p < .001). No correlation was observed between parental QoL and B-IPQ (p => .05). Of note, 56.3% of patients had poor QoL, scoring below the PedsQL cut-off, while 43.8% of parents had poor QoL for general health, scoring below the WHOQOL-BREF cut-off for general health. CONCLUSION: Although disease perception did not correlate with disease activation in jSLE, it significantly impacted patient QoL. Enhancing patients' perceptions of jSLE may improve their overall QoL.

Current investigation of the high prevalence of sexual dysfunction in female patients with systemic lupus erythematosus: a cross-sectional study.

Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that affects women of childbearing age and has been reported to cause sexual dysfunction in women. Although there are articles on sexual function in women with SLE, the number of articles is small, and the factors affecting sexual function in women with SLE are controversial. Based on this, this study aimed to investigate the prevalence of sexual dysfunction in Chinese female SLE patients and to explore the factors that influence it. The study design was a cross-sectional study conducted from December 2023 to April 2024 in the Department of Rheumatology and Immunology of a tertiary hospital in Hefei, Anhui Province. A total of 293 female patients diagnosed with SLE were enrolled using face-to-face questionnaires and online questionnaires. The questionnaire consisted of four parts: general information questionnaire, fatigue severity scale (FSS), depression-anxiety-stress scale (DASS-21), and female sexual functioning index (FSFI) scale. A total of 173 (59.04%) patients had sexual dysfunction, including 251 (85.67%) with decreased libido and 186 (63.46%) with difficulty in sexual arousal. There was a correlation between the patients' total FSFI scores and age (p = 0.028), marital satisfaction (p < 0.001), own education level (p = 0.008), partner's education level (p = 0.003), place of residence (p = 0.039), monthly household income (p < 0.001), family financial satisfaction(p < 0.001), menstrual status (p = 0.003), hormone use (p = 0.021),immunosuppressant use (p = 0.042), disease activity (p = 0.016), FSS score (p < 0.001), stress score (p < 0.001), anxiety score (p < 0.001) and depression score (p < 0.001)were correlated. The results of stepwise regression analysis showed that marital satisfaction (b = 2.011, t = 3.797, p < 0.001), monthly household income (b = 0.854, t = 2.316, p = 0.021), menstrual status (b = 1.218, t = 2.350, p = 0.019), fatigue scale score (b = - 0.069, t = - 2.302, p = 0.022), and depression score (b = - 0.117, t = - 2.910, p = 0.004) were the influencing factors of FSFI total score, and the difference was statistically significant. The incidence of sexual dysfunction in Chinese female SLE patients is high, and medical personnel should pay more attention to patients' sexual problems, to provide theoretical and practical bases for further prevention, treatment, and care of sexual dysfunction in female SLE patients.

Sexual dysfunction among female patients with rheumatic diseases.

To demonstrate the burden of sexual dysfunction (SD) among females with rheumatic diseases, we conducted a cross-sectional comparative study in patients with systemic sclerosis (SSc), systemic lupus erythematosus (SLE), and Behçet's syndrome (BS) along with suitable healthy controls (HCs). Age-matched female patients with SSc (n = 50), SLE (n = 49), and BS (n = 54), along with 52 female HCs were included in this study between April and October, 2021. Sociodemographic features were recorded, and psychometric tests, i.e., female sexual function index (FSFI), Beck depression inventory (BDI), body cathexis scale, and marital adjustment test (MAT) were performed. Scale scores were compared, and binary logistic regression was used to identify predictors for SD in the whole group. The total FSFI and body cathexis scores among the patient groups were significantly lower than those of the HCs (p < 0.001). Depression was significantly more frequent in the patient groups. MAT scores did not differ significantly between the study groups. Patients with SSc had the worst scores in each psychometric index, including MAT. Decreased body cathexis score [OR 0.974, 95% CI (0.957-0.991), p = 0.003] and low MAT score [OR 0.937, 95% CI (0.896-0.980), p = 0.005], and being diagnosed with SSc [OR 6.6, 95% CI (1.975-22.498), p = 0.002], SLE [OR 2.7, 95% CI (0.998-7.753), p = 0.050], and BS [OR 2.8, 95% CI (1.100-7.359), p = 0.031], were identified as independent predictors for SD. Body cathexis seems to be the most important independent predictor for SD, and the burden of SD appears heavier in patients with SSc, probably due to poor body image satisfaction.

The effects of lifestyle interventions on disease activity and quality of life in patients with systemic lupus erythematosus: A systematic review.

INTRODUCTION: Systemic Lupus Erythematosus (SLE) is an autoimmune disease affecting multiple organs, characterized by flares and remission. Treatment aims to reduce flare severity and prevent long-term damage, but remission is often elusive, and patients may still experience flares and a reduced quality of life (QoL). This had led to a growing interest in non-pharmacological therapies to improve patient wellbeing. OBJECTIVE: We aimed to assess and summarize the efficacy of lifestyle interventions in SLE patients on disease activity and QoL. METHODS: A systematic search on lifestyle interventions, SLE, disease activity, and QoL was conducted in PubMed/Medline, Embase and Clinicaltrials.gov in August 2024. Included studies were randomized controlled trials on lifestyle interventions in adult SLE patients. Each trial was appraised using Scottish Intercollegiate Guidelines Network (SIGN) criteria, with participant numbers, study duration, intervention type and outcome measures detailed in separate tables. RESULTS: A total of 3564 articles were screened, resulting in the inclusion of 25 randomized controlled trials with 1521 patients. Study quality varied from high (11 studies) to low (6 studies) with considerable intervention heterogeneity. The interventions fell into five categories: physical activity, psychotherapy, lifestyle coaching, supplements and dietary interventions. Physical activity (2 studies, 116 patients), psychotherapy (5 studies, 507 patients) and coaching (1 study with 30 patients) had no significant effect on disease activity, while fish oil supplementation showed a slight benefit in two studies with a total of 102 patients. Quality of life generally improved with physical activity (4 studies with in total 253 patients) and psychotherapy (9 studies with in total 623 patients), with significant mental health benefits, but coaching (3 studies with in total 186 patients) showed no effect. CONCLUSION: Various lifestyle interventions influence quality of life in SLE patients. Consistent with recent guidelines, both exercise and psychotherapy may positively impact the health-related quality of life in these patients. However, some studies were biased due to self-reported outcomes and the Hawthorne effect, where participants' behavior changed from receiving extra attention. Further research with larger patient cohorts is necessary to reduce the influence of heterogeneity across different studies and to better understand the potential of these promising therapies.

Effects of systemic lupus erythematosus on the brain: a systematic review of structural MRI findings and their relationships with cognitive dysfunction.

BACKGROUND: Cognitive dysfunction (CD) is highly prevalent in systemic lupus erythematosus (SLE), yet the underlying mechanisms are poorly understood. Neuroimaging utilising advanced MRI metrics may yield mechanistic insights. We conducted a systematic review of neuroimaging studies to investigate the relationship between structural and diffusion MRI metrics and CD in SLE. METHODS: We systematically searched several databases between January 2000 and October 2023 according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Retrospective and prospective studies were screened for search criteria keywords (including structural or diffusion MRI, cognitive function and SLE) to identify peer-reviewed articles reporting advanced structural MRI metrics and evaluating CD in human patients with SLE. RESULTS: Eighteen studies (8 structural MRI, 9 diffusion MRI and 1 with both modalities) were included; sample sizes ranged from 11 to 120 participants with SLE. Neurocognitive assessments and neuroimaging techniques, parameters and processing differed across articles. The most frequently affected cognitive domains were memory, psychomotor speed and attention; while abnormal structural and/or diffusion MRI metrics were found more consistently in the hippocampus, corpus callosum and frontal cortex of patients with SLE, with and without clinically diagnosed central nervous system involvement. CONCLUSION: Advanced structural MRI analysis can identify total and regional brain abnormalities associated with CD in patients with SLE, with potential to enhance clinical assessment. Future collaborative, longitudinal studies of neuroimaging in SLE are needed to better characterise CD, with focus on harmonised neurocognitive assessments, neuroimaging acquisitions and postprocessing analyses and improved clinical characterisation of SLE cohorts.

Experiencing pregnancy in the context of lupus and antiphospholipid syndrome: a grounded theory.

OBJECTIVE: To understand the meanings attributed to pregnancy in the context of Lupus and antiphospholipid syndrome by women and healthcare professionals. METHOD: Qualitative research, using Symbolic Interactionism as a theoretical framework and Grounded Theory, a constructivist perspective. Data were collected between January and August 2022, through online interviews with 27 women with Lupus located on the social network Facebook and in-person or remote interviews with 12 healthcare professionals. RESULTS: The theoretical model constructed has two categories: "Equal conditions, distinct experiences: experiencing the gestational process" shows that obstetric complications and lack of connection with healthcare professionals trigger negative meanings to the experience; and "Therapeutic management interfering in the attribution of meanings to the experience", demonstrates that the way women interact with healthcare professionals and how they manage treatment favors a positive reframing. FINAL CONSIDERATIONS: The meanings attributed to pregnancy are elaborated and modified according to the interpretation of previous and current experiences, healthcare trajectory and interactions with healthcare professionals. Previous guidance, planning, bonding and trust in healthcare professionals enable positive meanings, while obstetric complications, unqualified assistance and lack of bonding with professionals provide negative meanings.

Neuropsychiatric involvement in systemic lupus erythematosus contributes to organ damage beyond the nervous system: a post-hoc analysis of 5 phase III randomized clinical trials.

OBJECTIVE: To investigate the association between neuropsychiatric systemic lupus erythematosus (NPSLE) and SLICC/ACR damage index (SDI) items, especially non-neuropsychiatric items. METHODS: Baseline data from five phase III trials (BLISS-52, BLISS-76, BLISS-SC, BLISS-NEA, EMBRACE) were analysed. NPSLE involvement was defined as NP BILAG A/B/C/D (n = 272); NP BILAG E denoted non-neuropsychiatric SLE (n = 3273). We employed multivariable logistic regression analysis adjusting for age, sex, disease duration, and ethnicity. RESULTS: The median (IQR) and mean ± SD SDI scores were 0 (0-1) and 0.62 ± 1.09. Compared with the non-neuropsychiatric SLE group, NPSLE patients were more likely to develop damage (adjusted (a)OR = 2.86; 95% CI = 2.28-3.59). This held true also after suppression of the NP SDI items (aOR = 1.70; 95% CI = 1.36-2.12). Beyond the neuropsychiatric domain, NPSLE was associated with damage in the cardiovascular (aOR = 2.63; 95% CI = 1.75-3.95), musculoskeletal (aOR = 1.90; 95% CI = 1.43-2.52), and skin (aOR = 1.54; 95% CI = 1.06-2.22) SDI domains. Dissecting domains into items, NPSLE was associated with coronary artery disease (aOR = 3.08; 95% CI = 1.44-6.58), myocardial infraction (aOR = 3.11; 95% CI = 1.54-6.27), muscle atrophy (aOR = 3.34; 2.16-5.16), scarring alopecia (aOR = 1.79; 95% CI = 1.19-2.70), bowel infarction (aOR = 1.98; 95% CI = 1.20-3.26), retinopathy (aOR = 2.23; 95% CI = 1.15-4.32), and premature gonadal failure (aOR = 2.10; 95% CI = 1.11-3.90). CONCLUSION: The intricate association between NPSLE and damage accrual extends beyond the nervous system to also comprise the musculoskeletal, skin, and cardiovascular organ systems.

Psychological impact of life events in systemic lupus erythematosus patients - Differences between flares and remission.

BACKGROUND: Stress has been linked to worsening symptoms and increased disease activity in patients with Systemic lupus erythematosus (SLE). Life-events are individual stress points, and there is conflicting evidence regarding their role in SLE activity and disease perception. METHODS: Adult SLE patients were recruited for the study. Clinical and laboratory features of SLE were recorded, and previous diagnosis of anxiety or depression were retrieved from patients' electronic charts. Flares were defined by the Systemic Lupus Erythematosus Disease Activity (SLEDAI) flare Index, and flares during the previous year were documented. During a routine visit, they completed validated Portuguese translations of the 10-item Perceived Stress Scale (PSS-10), Hospital Anxiety and Depression Scale (HADS) and Life Experience Survey (LES) for the previous year. RESULTS: A total of 47 female SLE patients were recruited. Ten patients (21.3%) had experienced recent flares. Patients with recent flares reported fewer life events, with lower positive, negative, and total weightings sums compared to those without recent flares. Although 42.2% of patients perceived pathological levels of stress in the previous month, 48.9% had anxiety symptoms, and 34% were at high risk for an anxiety disorder, these psychometric measures did not differ significantly between the recent flare and no-flare groups. CONCLUSIONS: There is a high prevalence of pathological levels of stress among SLE patients. SLE patients with recent flares report less psychological impact from life events, both positive and negative, independent of other psychological or pharmacological factors.

A qualitative investigation of the experiences of patients living with antiphospholipid antibodies.

OBJECTIVE: Substantial morbidity and mortality affect those with antiphospholipid antibodies (aPLs) and antiphospholipid syndrome (APS), yet patient experiences remain poorly understood. This research investigated patient experiences of aPL/APS diagnosis; effects on daily life; and healthcare and treatment. METHODS: Patients aged ≥18 years with APS per the Revised Sapporo criteria or with ≥1 positive aPL on ≥2 occasions were recruited from a Canadian multidisciplinary APS clinic to participate in semi-structured in-depth interviews. Interviews were conducted virtually and transcribed verbatim for subsequent thematic analysis. RESULTS: Twenty-one patients with aPLs/APS participated; 95.2% were female, mean (SD) age was 45.6 (15.0) years. Most (71.4%) had APS, and 71.4% had aPLs/APS with SLE. Results are presented around patient experiences of aPL/APS diagnosis, effects on daily life, and healthcare and treatment. Participants described medical complications/physical symptoms and the healthcare, lifestyle, and emotional impacts experienced around the time of aPLs/APS diagnosis. In addition to the physical and psychosocial impacts of living with aPLs/APS, patients reported modified leisure activities, altered employment trajectories, and positive and negative impacts on relationships. Impacts on family planning were also a critical component of the aPL/APS lived experience; participants shared experiences of miscarriage, other pregnancy complications, and medication-related challenges (e.g., with low-molecular-weight heparin injections). Challenging aspects of aPL/APS healthcare and treatment were also discussed, particularly related to the lifestyle, physical, and emotional burden of medication use. Although a lack of resources was described, participants expressed trust in healthcare providers when making management decisions or when seeking information. Suggestions for resources included the need for additional medication-related information, examples to help contextualize management behaviours, and additional information for those with aPLs/APS without SLE. CONCLUSION: Patients highlighted how the diverse manifestations of aPLs/APS, accentuated by management-related challenges, impose considerable physical and psychosocial burdens. Results will inform the development of patient resources aligned with patient priorities.