scholarly journals P191 Chinese systemic lupus erythematosus treatment and research group (CSTAR) registry – subjective well-being in patients with systemic lupus erythematosus

2020 ◽  
Author(s):  
Yue Shi ◽  
Dandan Bi ◽  
Yanhong Wang ◽  
Ruofan Li ◽  
Lijun Wu ◽  
...  
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Research Group ◽  
Well Being ◽  
Subjective Well Being ◽  
Systemic Lupus

Effects of dehydroepiandrosterone on fatigue and well-being in women with quiescent systemic lupus erythematosus: a randomised controlled trial

2009 ◽  
Vol 69 (6) ◽  
pp. 1144-1147 ◽  
Author(s):  
A Hartkamp ◽  
R Geenen ◽  
G L R Godaert ◽  
M Bijl ◽  
J W J Bijlsma ◽  
...  
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Controlled Trial ◽  
Well Being ◽  
Controlled Study ◽  
Systemic Lupus ◽  
Double Blind ◽  
Female Patients ◽  
General Fatigue ◽  
Mental Well Being

ObjectiveDehydroepiandrosterone (DHEA) has been reported to improve fatigue and reduced well-being. Both are major problems in patients with systemic lupus erythematosus (SLE), even with quiescent disease. Low serum DHEA levels are common in SLE. The present work investigates the effects of DHEA administration on fatigue, well-being and functioning in women with inactive SLE.MethodsIn a double-blind, randomised, placebo-controlled study, 60 female patients with inactive SLE received 200 mg oral DHEA or placebo. Primary outcome measures were general fatigue, depressive mood, mental well-being and physical functioning. Assessments were made before treatment, after 3, 6 and 12 months on medication, and 6 months after cessation of treatment.ResultsPatients from the DHEA and placebo group improved on general fatigue (p<0.001) and mental well-being (p=0.04). There was no differential effect of DHEA. The belief that DHEA had been used was a stronger predictor for improvement of general fatigue than the actual use of DHEA (p=0.04).ConclusionsThe trial does not indicate an effect of daily 200 mg oral DHEA on fatigue and well-being, and therefore DHEA treatment is not recommended in unselected female patients with quiescent SLE.Clinical Trials Registration Number NCT00391924

scholarly journals THE BENEFITS OF FOLLOW-UP BY THE MULTIDISCIPLINARY TEAM IN HEALTH FOR PEOPLE WITH SYSTEMIC LUPUS ERYTHEMATOSUS

2021 ◽  
pp. 17
Author(s):  
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Joint Stiffness ◽  
Well Being ◽  
Support Network ◽  
Physical Conditioning ◽  
Systemic Lupus ◽  
Health Team

Objective: Discuss the benefits of monitoring by a multidisciplinary health team for the treatment of patients with systemic lupus erythematosus. Methods: The research proposal is based on a review of bibliographic references, with a source of synthesizing results obtained through secondary research on the theme, in a methodical and orderly manner, seeking to contribute to the knowledge on the proposed subject. Results: Through a thorough analysis of theoretical references, 30 scientific articles were selected that alluded to the systemic lupus erythematosus pathology. Systemic lupus is characterized by articular, cutaneous, renal, vascular, serous, nervous manifestations, decreased mobility, muscle strength, physical conditioning and quality of sleep, increased joint stiffness, pain and fatigue and can cause, even depression, obesity and / or malnutrition, impacting quality of life. Conclusion: The research presented relevant results on the monitoring by the multidisciplinary health team for the treatment of patients diagnosed with systemic lupus erythematosus, presenting data that justify the construction of a structured support network, which will contribute to the therapy of this patient, providing well-being and improvements in quality of life. Taking into account the situation that the pathology presents, these data are at least disturbing. These bases made it possible to expand the discernment on the subject, opening a succession of discussions to find proposals and resolutions that can corroborate with the treatment of people diagnosed with chronic diseases such as SLE.

scholarly journals Relationship between remission, disease activity and patient-reported outcome measures in patients with recent-onset systemic lupus erythematosus

Lupus ◽  
2020 ◽  
Vol 29 (6) ◽  
pp. 625-630
Author(s):  
Rebecca Heijke ◽  
Mathilda Björk ◽  
Martina Frodlund ◽  
Laura McDonald ◽  
Evo Alemao ◽  
...  
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Disease Activity ◽  
Pain Intensity ◽  
Lupus Erythematosus ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Systemic Lupus ◽  
Recent Onset ◽  
Patient Reported

Objective Definitions of remission in systemic lupus erythematosus (SLE; DORIS (1A/1B/2A/2B)), disease activity assessments and patient-reported outcome measures (PROMs) are useful in shared decision making between patients with SLE and physicians. We used longitudinal registry data from well-characterized Swedish patients with recent-onset SLE to explore potential correlations between DORIS status or disease activity, and PROMs. Methods Patients from the Clinical Lupus Register in North-Eastern Gothia, Sweden, who fulfilled the 1982 American College of Rheumatology and/or the 2012 Systemic Lupus International Collaborating Clinics classification criteria without prior organ damage, were enrolled at diagnosis. Data on treatments, serology, remission status (DORIS), disease activity (SLE Disease Activity Index-2000 (SLEDAI-2K)) and PROMs (quality of life: EuroQoL-5 Dimensions (EQ-5D); pain intensity, fatigue and well-being: visual analog scale (VAS) 0–100 mm) were collected during rheumatology clinic visits at months 0 (diagnosis), 6, 12, 24, 36, 48 and 60. Correlations were assessed using Pearson correlation and/or beta regression coefficients. Results A total of 41 patients were enrolled (median age = 39 years, 80% female, 85% white). Achievement of DORIS 1A and 2A (neither of which includes serology) significantly correlated with all PROMs (EQ-5D: p ≤ 0.02; pain: p = 0.0001; fatigue: p = 0.0051; well-being: p < 0.0001). Disease activity measures were correlated with VAS pain intensity ( p < 0.03) and VAS well-being ( p < 0.04). Conclusions Our findings illustrate the importance of the interplay between remission, disease activity assessments and PROMs. PROMs may be a useful tool in clinical practice, being administered prior to patient visits to streamline clinical care.

Role strain and psychological well-being in women with systemic lupus erythematosus.

1994 ◽  
Vol 13 (2) ◽  
pp. 184-184
Author(s):  
Alison K. Karasz ◽  
Elizabeth Bochnak ◽  
Suzanne C. Ouellette
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Role Strain ◽  
Well Being ◽  
Systemic Lupus ◽  
Psychological Well Being

scholarly journals Chinese SLE Treatment and Research Group (CSTAR) Registry: prevalence and risk factors for chronic scarring alopecia in patients with systemic lupus erythematosus

2020 ◽  
Author(s):  
Yirong Xiang ◽  
Mengtao Li ◽  
Hui Luo ◽  
Yanhong Wang ◽  
Xinwang Duan ◽  
...  
Keyword(s):  
Risk Factors ◽  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Research Group ◽  
Life Quality ◽  
Treatment Strategies ◽  
Disease Course ◽  
Systemic Lupus ◽  
Scarring Alopecia ◽  
Major Organ

Abstract Background Scarring alopecia in systemic lupus erythematosus (SLE) patients caused reduced life quality and prolonged disease course. This case control study aims to survey the prevalence of scarring alopecia during the disease course of SLE and evaluate the risk factors for scarring alopecia. Methods SLE patients in Chinese SLE treatment and Research group (CSTAR) were recruited. Scarring alopecia was defined according to the SLICC/ACR-DI which was collected during follow-up visit or via self-reported questionnaires. We collected demographic characteristics, common comorbidities, autoantibody profiles, disease activity status, major organ involvements and treatment strategies of these patients at registry. Univariate and multivariate logistic regression analyses were used to investigate the risk factors for scarring alopecia. Results We recruited 4792 SLE patients, and 374 (7.80%) patients had scarring alopecia. Mucocutaneous lesions (OR 2.062, p < 0.001), high SLICC/ACR-DI (OR 1.409, p < 0.001) and positive anti-Sm (OR 1.374, p = 0.029) were risk factors for scarring alopecia, while renal (OR 0.714, p = 0.028) and cardio-respiratory involvements (OR 0.347, p = 0.044), and immunosuppressants treatment (OR 0.675, p < 0.001) were significant protective factors. Conclusions The prevalence of scarring alopecia in SLE patients is 7.80%. Active treatment strategies should be adopted to prevent scarring alopecia occurring.

scholarly journals Healthcare and Research Priorities of Adolescents and Young Adults with Systemic Lupus Erythematosus: A Mixed-methods Study

2017 ◽  
Vol 44 (4) ◽  
pp. 444-451 ◽  
Author(s):  
David J. Tunnicliffe ◽  
Davinder Singh-Grewal ◽  
Jonathan C. Craig ◽  
Martin Howell ◽  
Peter Tugwell ◽  
...  
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Young Patients ◽  
Research Priorities ◽  
Well Being ◽  
Psychosocial Needs ◽  
Systemic Lupus ◽  
Patient Centered ◽  
Psychological Burden ◽  
Future Goals

Objective.Managing juvenile-onset systemic lupus erythematosus (SLE) is particularly challenging. The disease may be severe, adolescent patients have complex medical and psychosocial needs, and patients must navigate the transition to adult services. To inform patient-centered care, we aimed to identify the healthcare and research priorities of young patients with SLE and describe the reasons underpinning their priorities.Methods.Face-to-face, semistructured interviews and focus groups were conducted with patients with SLE, aged from 14 to 26 years, from 5 centers in Australia. For each of the 5 allocation exercises, participants allocated 10 votes to (1) research topics; research questions on (2) medical management, (3) prevention and diagnosis, (4) lifestyle and psychosocial; and (5) healthcare specialties, and discussed the reasons for their choices. Descriptive statistics were calculated for votes and qualitative data were analyzed thematically.Results.The 26 participants prioritized research that alleviated the psychological burden of SLE. They allocated their votes toward medical and mental health specialties in the management of SLE, while fewer votes were given to physiotherapy/occupational therapy and dietetics. The following 7 themes underpinned the participants’ priorities: improving service shortfalls, strengthening well-being, ensuring cost efficiency, minimizing family/community burden, severity of comorbidity or complications, reducing lifestyle disruption, and fulfilling future goals.Conclusion.Young patients with SLE value comprehensive care with greater coordination among specialties. They prioritized research focused on alleviating poor psychological outcomes. The healthcare and research agenda for patients with SLE should include everyone involved, to ensure that the agenda aligns with patient priorities, needs, and values.

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