Health locus of control and well-being in systemic lupus erythematosus

1988 ◽  
Vol 1 (3) ◽  
pp. 131-138 ◽  
Author(s):  
Carol A. Pfeiffer ◽  
Scott L. Wetstone
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Locus Of Control ◽  
Lupus Erythematosus ◽  
Health Locus Of Control ◽  
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 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.

scholarly journals Parameters of the internal picture of the disease and quality of life in patients with systemic lupus erythematosus

2020 ◽  
Vol 14 (3) ◽  
pp. 57-62
Author(s):  
V. M. Yaltonsky ◽  
I. N. Abrosimov ◽  
T. D. Andrushkevich ◽  
E. M. Shashurina ◽  
S. K. Solovyev ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Personal Control ◽  
Well Being ◽  
Systemic Lupus ◽  
Group 2 ◽  
Threat To Life ◽  
Group 1

Objective: to analyze the structural features of the internal picture of the disease (IPD in patients with systemic lupus erythematosus (SLE) and its ratio with quality of life (QOL) as an indicator of adaptation to the disease.Patients and methods. The investigation enrolled 51 patients with SLE. Comparison groups included patients differing in the psychological parameter – the perception of the existing disease as a threat to life and health: Group 1 (n=17) regarded their disease as a moderate threat to life and well-being; Group 2 (n=34) considered it as a severe threat.Results and discussion. Comparative analysis of the cognitive level of IPD revealed statistically significant differences between the patients of Groups 1 and 2 in the following scales: «course of the disease» (p<0.001), «personal control» (p<0.001), «treatment control» (p<0.001), «understandability of the disease» (p<0.001), «emotional response to the disease» (p<0.005), and «overall level of disease threats» (p<0.001). It turned out that Group 1 patients better understood the features of the course and manifestation of the disease, were more confident in the efficiency and importance of the treatment prescribed, as well as in their own capabilities to improve their health status. Group 2 patients were more inclined to try to cope with the existing negative experiences, by avoiding the problem.Conclusion. IPD can be different in patients with SLE. The perception of illness as a severe threat negatively affects the efficiency of therapy, mental well-being, social activity, and ultimately QOL. The findings can be used to develop programs for psychological support of patients with rheumatic diseases, in particular those with SLE.

scholarly journals Quality of Life in Systemic Lupus Erythematosus

2006 ◽  
Vol 13 (2-4) ◽  
pp. 321-324 ◽  
Author(s):  
Pantelis Panopalis ◽  
Ann E. Clarke
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Short Form ◽  
Improve Patient Care ◽  
Well Being ◽  
Systemic Lupus ◽  
Generic Measures ◽  
Disease Specific

Systemic lupus erythematosus (SLE) is a pervasive disease with wide-ranging effects on physical, psychological and social well-being. As such, a comprehensive assessment of SLE should include several different outcomes, such as quality of life (QoL) and economic costs, in addition to measures of disease activity and damage. In fact, disease effects on QoL are often considered of greater overall importance to patients. Two approaches have been used in the measurement of QoL: generic questionnaires and disease-specific questionnaires. Generic questionnaires are designed to be used across various conditions and populations, whereas disease-specific questionnaires are designed to measure outcomes in one specific disease or condition. The most commonly used measure of QoL is the Medical Outcomes Study Short Form 36 (SF-36), which is a generic measure that is applicable in a variety of conditions, including SLE. Recently, SLE-specific measures have been developed that may prove to be more responsive than generic measures. The hope is that improved outcome measures will allow for better assessment of SLE and eventually facilitate drug development and improve patient care.

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