scholarly journals Plant-based dietary changes may improve symptoms in patients with systemic lupus erythematosus

Lupus ◽  
2022 ◽  
pp. 096120332110637
Author(s):  
Aziyadé Knippenberg ◽  
George A Robinson ◽  
Chris Wincup ◽  
Coziana Ciurtin ◽  
Elizabeth C Jury ◽  
...  
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Symptom Severity ◽  
Online Survey ◽  
Dietary Change ◽  
Processed Foods ◽  
Eating Patterns ◽  
Systemic Lupus ◽  
Disease Symptoms ◽  
Dietary Changes

Introduction Previous studies have reported that patients affected by systemic lupus erythematosus (SLE) are interested in using diet to treat fatigue, cardiovascular disease and other symptoms. However, to date, there is insufficient information regarding the ways for patients to modify their diet to improve SLE symptoms. We investigated the relationship between the eating patterns of SLE patients and their self-reported disease symptoms and general aspects of health. Methods A UK-based, online survey was developed, in which patients with SLE were asked about their attitudes and experiences regarding their SLE symptoms and diet. Results The majority (>80%) of respondents that undertook new eating patterns with increased vegetable intake and/or decreased intake of processed food, sugar, gluten, dairy and carbohydrates reported benefiting from their dietary change. Symptom severity ratings after these dietary changes were significantly lower than before (21.3% decrease, p<0.0001). The greatest decreases in symptom severity were provided by low/no dairy (27.1% decrease), low/no processed foods (26.6% decrease) and vegan (26% decrease) eating patterns (p<0.0001). Weight loss, fatigue, joint/muscle pain and mood were the most cited symptoms that improved with dietary change. Conclusion SLE patients who changed their eating patterns to incorporate more plant-based foods while limiting processed foods and animal products reported improvements in their disease symptoms. Thus, our findings show promises in using nutrition interventions for the management of SLE symptoms, setting the scene for future clinical trials in this area. Randomised studies are needed to further test whether certain dietary changes are effective for improving specific symptoms of SLE.

scholarly journals Living with systemic lupus erythematosus in 2020: a European patient survey

2021 ◽  
Vol 8 (1) ◽  
pp. e000469
Author(s):  
Alain Cornet ◽  
Jeanette Andersen ◽  
Kirsi Myllys ◽  
Angela Edwards ◽  
Laurent Arnaud
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Online Survey ◽  
Complex Disease ◽  
Renal Involvement ◽  
Median Number ◽  
Sexual Life ◽  
Diagnosis Delay ◽  
Systemic Lupus ◽  
Organ Systems

ObjectiveThe aim of this study was to analyse the 2020 burden of Systemic Lupus Erythematosus (SLE) in Europe, from the patients’ perspective.MethodsIn May 2020, Lupus Europe, the European umbrella patient association for SLE, designed and disseminated a multilingual anonymous online survey to individuals with a self-reported physician’s diagnosis of SLE living in Europe.ResultsData from 4375 SLE survey respondents (95.9% women, median age: 45 (IQR: 36–54) years, 70.7% Caucasians) from 35 European countries were analysed. The median age at SLE diagnosis was 30 years (IQR: 22–40) and the median diagnosis delay was 2 years (IQR: 0–6). The most commonly affected organ-systems included the joints (81.8%) and skin (59.4%), with renal involvement in 30%. Another diagnosis was given before that of SLE in 45.0%, including psychological/mental disorders in 9.1% and fibromyalgia in 5.9%. The median number of symptoms reported was 9 (IQR: 6–11) out of 21, with fatigue most common (85.3%) and most bothersome. The median number of SLE-related medications was 5 (IQR: 3–7), including antimalarials (75%), oral glucocorticoids (52.4%), immunosuppressants (39.8%) and biologics (10.9%). Respondents reported significant impact over their studies, career and emotional/sexual life in 50.7%, 57.9% and 38.2%, respectively. Appropriate access to care was highly variable across countries and care component.ConclusionThis survey underlines the 2020 burden and strong heterogeneity in the care of SLE across Europe, from the patient’s perspective. Altogether, these data may prove crucial to physicians, patients and policy-makers to improve the diagnosis and management of this rare and complex disease.

Characteristics and information searched for by French patients with systemic lupus erythematosus: A web-community data-driven online survey

Lupus ◽  
2015 ◽  
Vol 25 (4) ◽  
pp. 370-375 ◽  
Author(s):  
B Meunier ◽  
N Jourde-Chiche ◽  
J Mancini ◽  
M Chekroun ◽  
F Retornaz ◽  
...  
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Online Survey ◽  
Data Driven ◽  
Systemic Lupus ◽  
Web Community ◽  
Community Data

FRI0156 WORK PARTICIPATION IN PATIENTS WITH SYSTEMATIC LUPUS ERYTHEMATOSUS: A SYSTEMATIC REVIEW

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 662.1-662
Author(s):  
B. Blomjous ◽  
G. Gajadin ◽  
I. Bultink ◽  
A. Voskuyl ◽  
L. Falzon ◽  
...  
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Prediction Model ◽  
Lupus Erythematosus ◽  
Work Disability ◽  
Online Survey ◽  
Longitudinal Design ◽  
Work Participation ◽  
Systemic Lupus ◽  
Work Related ◽  
The Impact

Background:The treatment of systemic lupus erythematosus (SLE) has improved over the last decades, however, absenteeism and work disability numbers remain higher than those observed in the general population (1). SLE has its onset between the ages of 20 and 40 years, and has a major burden on the lives of patients, both mentally and financially. A recent online survey amongst 2070 European SLE patients revealed that 69.5% of patients had their careers affected due to SLE (2).Objectives:To determine the magnitude of absenteeism and work disability in patients with SLE and to investigate the factors that might affect work participation in these patients in order to develop interventions to reduce the impact of the burden in the future.Methods:A systematic literature search was performed to identify published articles reporting on the prevalence of work related burden, as well as the relation of having SLE on employment status, sick leave and/or presenteeism. Full-text original articles (all languages) published before April 2019 were identified by literature search performed in MEDLINE, Cochrane, Embase and CINAHL.Results:In total, 2057 non-duplicate citations were screened after database searching and snowballing. Finally, 81 articles were included; most studies (n=59) had a cross-sectional design and the remaining 22 studies had a longitudinal design. Only 15 longitudinal cohort studies reported on associations, 6 studies described a longitudinal prediction model, 2 studies reported on associations and described a prediction model, and 3 studies had a longitudinal design but only reported on prevalences over time. In total, 3500 working patients were included in the studies reporting on associations or describing a longitudinal prediction model. In the association studies, the most frequently used outcome measures were respectively being employed/probability of being employed and work loss/job cessation. Other studies used loss of days from (non)workforce activities/sick leave days, work disability, productivity loss or work entry. Most associations with work outcome were found for demographic variables and two or three disease variables, like Systemic Lupus Activity Questionnaire (SLAQ) score and depressive symptoms. This was also the case in the prediction studies. Most studies did not assess work related variables as possible predictors for work outcome.Conclusion:A large heterogeneity was found in type of study design and outcome measures, which limits comparison with other studies. More longitudinal studies are needed to truly assess the impact of SLE on work participation, and to identify factors that could be influenced during interventions, in order to encourage work participation of these patients.References:[1]Bultink IE, Turkstra F, Dijkmans BA, Voskuyl AE. High prevalence of unemployment in patients with systemic lupus erythematosus: association with organ damage and health-related quality of life. J Rheumatol. 2008;35(6):1053-7.[2]Gordon C, Isenberg D, Lerstrom K, Norton Y, Nikai E, Pushparajah DS, et al. The substantial burden of systemic lupus erythematosus on the productivity and careers of patients: a European patient-driven online survey. Rheumatology (Oxford). 2013;52(12):2292-301.Disclosure of Interests:None declared

Development and Assessment of Users’ Satisfaction with the Systemic Lupus Erythematosus Disease Activity Index 2000 Responder Index-50 Website

2012 ◽  
Vol 40 (1) ◽  
pp. 34-39 ◽  
Author(s):  
ZAHI TOUMA ◽  
DAFNA D. GLADMAN ◽  
ANNE MacKINNON ◽  
SIMON CARETTE ◽  
MAHMOUD ABU-SHAKRA ◽  
...  
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Clinical Trials ◽  
Disease Activity ◽  
Lupus Erythematosus ◽  
Online Survey ◽  
Activity Index ◽  
Disease Activity Index ◽  
Second Phase ◽  
Systemic Lupus Erythematosus Disease ◽  
Systemic Lupus

Objective.To describe the development of the Systemic Lupus Erythematosus Disease Activity Index 2000 Responder Index-50 (S2K RI-50) Website (www.s2k-ri-50.com) and to assess satisfaction with its training and examination modules among rheumatologists and rheumatology fellows.Methods.The development of the Website occurred in 3 phases. The first was a deployment phase that consisted of preparing the site map along with its content. The content included the S2K RI-50 training manual, the tests and corresponding question bank, and the online adaptive training module, along with the extensive site testing. The second phase included the participation of rheumatologists and trainees who completed the Website modules. The third was a quality assurance phase in which an online survey was developed to determine the satisfaction level of its users. Further modifications were implemented per participants’ recommendations.Results.The site has been online since it was registered in September 2010. Fourteen rheumatologists and rheumatology trainees from different centers reviewed and completed the material contained in the Website. The survey revealed acceptance among rheumatologists for the Website’s content, design, and presentation. The Website was rated as user-friendly and useful in familiarizing investigators with the S2K RI-50. After completion of the training and examination modules, participants reported a suitable level of preparation to implement the S2K RI-50 in clinical trials and research settings in a timely manner.Conclusion.The Website includes training and examination modules that familiarize rheumatologists with the S2K RI-50 and assesses their competence to use the index. This prepares them for the use of the S2K RI-50 in clinical trials and research settings.

Stress, depression, and anxiety predict average symptom severity and daily symptom fluctuation in systemic lupus erythematosus

1994 ◽  
Vol 17 (5) ◽  
pp. 459-477 ◽  
Author(s):  
Serrhel G. Adams ◽  
Paul M. Dammers ◽  
Tara L. Saia ◽  
Phillip J. Brantley ◽  
Gerard R. Gaydos
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Symptom Severity ◽  
Depression And Anxiety ◽  
Systemic Lupus

scholarly journals Diet and lupus: what do the patients think?

Lupus ◽  
2019 ◽  
Vol 28 (6) ◽  
pp. 755-763 ◽  
Author(s):  
G A Robinson ◽  
T Mcdonnell ◽  
C Wincup ◽  
L Martin-Gutierrez ◽  
J Wilton ◽  
...  
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Cardiovascular Disease ◽  
Social Media ◽  
Lupus Erythematosus ◽  
Online Survey ◽  
Disease Risk ◽  
Therapeutic Option ◽  
Cardiovascular Disease Risk ◽  
Systemic Lupus ◽  
Effective Manner

Objectives Cardiovascular disease is the leading cause of mortality in patients with systemic lupus erythematosus. Therefore, using diet to control blood lipid levels and modify cardiovascular disease risk could be a promising therapeutic strategy to control disease symptoms. The primary objective of this study was to learn about systemic lupus erythematosus patient experiences with diet, including their opinion on considering diet as a therapeutic option. The secondary objective was to obtain this information in a cost- and time-effective manner. Methods A lay summary and a 15-question diet-based online survey were publicly available for 3 weeks. Social media was used to promote the survey through relevant charities, hospitals and research groups. Results A total of 300 responses were received, 284 from patients with systemic lupus erythematosus. Patients reported that there was a lack of clinical counselling regarding diet, with only 24% stating their doctor had spoken to them about diet. Despite this, 100% of patients stated they would change their diet if they knew it would help their symptoms and 83% would take part in a future diet-based clinical trial. Text analysis of patient research suggestions identified a particular interest in using diet to treat fatigue and manage disease flares. Conclusions This project successfully gathered patient information regarding diet and systemic lupus erythematosus over a short timeframe using an anonymous social media platform. The survey provided evidence that patients support further research and potential diet intervention studies investigating the effect of diet on the symptoms of systemic lupus erythematosus.

scholarly journals SAT0169 HYDROXYCHLOROQUINE PRESCRIPTION PATTERNS IN EUROPE - THE EUROPEAN SURVEY FOR LUPUS PATIENTS (ESLP)

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1025.2-1026
Author(s):  
Z. Osmani ◽  
A. Cornet ◽  
W. Zacouris-Verweij ◽  
S. Frankel
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Online Survey ◽  
High Dose ◽  
Systemic Lupus ◽  
Prescription Patterns ◽  
European Survey ◽  
Hydroxychloroquine Retinopathy ◽  
Retinopathy Screening

Background:Long-term use of hydroxychloroquine (HCQ) is very common in patients with lupus erythematosus. It has been associated with wide-ranging benefits and it is generally well tolerated1. However, long-term use (i.e. > 5 years) and high-dose HCQ (i.e. > 5 mg/kg/day) are both considered to be risk factors for developing HCQ retinopathy2.Advances in our understanding of HCQ retinopathy has led to changes in the recommendations for HCQ dosing and retinopathy screening1-3. The latest EULAR guidelines for the management of systemic lupus erythematosus (SLE)4recommend a maximum HCQ dose of 5 mg/kg/day and ophthalmological screening at baseline and annually after 5 years of HCQ treatment.Objectives:To assess whether recent EULAR guidelines regarding HCQ dosing and retinopathy screening are affecting prescription patterns and screening frequencies in Europe.Methods:Patients in Europe were given the opportunity to complete the online European Survey for Lupus Patients (ESLP) initiated by LUPUS EUROPE. The survey was promoted on social media from the 26thof June – 11thof July 2019. The survey consisted of 29 questions. Each participant was asked, among other things, to report their body weight (kg), daily HCQ dose and if they have received baseline screening and/or regular eye examinations.Results:The online survey was completed by 2938 lupus patients from 36 countries. The majority were female (86.5%) and diagnosed with SLE (85.7%). The daily HCQ dose (mg/kg) was available from 1678 patients (57.1%). The median ± IQR HCQ dose was 4.3 ± 2.5 mg/kg/day with a median treatment duration of 7 years (IQR: 3 – 14).The recommended daily HCQ dose of 5 mg/kg was exceeded by 618 patients (36.8%). Low HCQ dose (≤ 4 mg/kg) was reported by 769 patients (45.8%). In addition, 284 out of 1786 patients (15.9%) reported they skipped HCQ once a week or more often. Nevertheless, only 8.7% of patients reported that they were more likely to skip HCQ than other medication. Patients from Belgium, Israel, France and Portugal reported the highest HCQ dosages. In contrast, patients from Spain reported the lowest HCQ dosages (Figure 1).Figure 1.HCQ dose (mg/kg/day) reported by patients (• median HCQ dose). PRT: Portugal, POL: Poland, NLD: Netherlands, ITA: Italy, ISR: Israel, GRC: Greece, FRA: France, FIN: Finland, ESP: Spain, DEU: Germany, CHE: Switzerland, BEL: Belgium.Moreover, 935 out of 1137 patients diagnosed in the past 10 years (82.2%) reported that they have received an ophthalmological screening at baseline. Lastly, 1167 patients reported long-term use of HCQ (i.e. ≥ 5 years). Only about 64% of them (n=748) reported that they receive regular eye examinations (i.e. at least once every year).Conclusion:Studies have suggested that prescription patterns in the USA and UK were already affected by guidelines regarding HCQ dosing1. We show large inter- and intra-country variations of HCQ dosing in Europe. Additionally, most centers fail to follow recent recommendations4regarding annual screening of retinopathy in case of long-term HCQ use.More research is needed to assess the clinical efficacy of low-dose HCQ and to confirm whether proper screening modalities are being employed as recommended by recent guidelines2-4.References:[1]Jorge A et al. Hydroxychloroquine retinopathy - implications of research advances for rheumatology care. Nat Rev Rheumatol. 2018 Dec; 14(12): 693-703.[2]Michael F. Marmor et al, 2016, Recommendations on Screening for Chloroquine and Hydroxychloroquine Retinopathy (2016 Revision). Ophthalmology. 123(6): 1386-94.[3]Imran H. Yusuf et al. The Royal College of Ophthalmologists recommendations on screening for hydroxychloroquine and chloroquine users in the United Kingdom: executive summary. Eye (Lond). 2018 Jul; 32(7): 1168–1173.[4]Fanouriakis A et al. 2019 update of the EULAR recommendations for the management of systemic lupus erythematosus. Ann Rheum Dis. 2019 Jun; 78(6): 736-745.Disclosure of Interests:None declared

scholarly journals Fluctuation, invisibility, fatigue – the barriers to maintaining employment with systemic lupus erythematosus: results of an online survey

Lupus ◽  
2018 ◽  
Vol 27 (14) ◽  
pp. 2284-2291 ◽  
Author(s):  
S Booth ◽  
E Price ◽  
E Walker
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Online Survey ◽  
Full Employment ◽  
Systemic Lupus ◽  
Adverse Health Outcomes ◽  
Health Distress ◽  
Work Family ◽  
Area Of Concern ◽  
Fear And Anxiety

Objectives Systemic lupus erythematosus (SLE) is associated with high levels of workplace disability and unemployment. The objective of this study was to understand the reasons for this and to describe the barriers and facilitators of employment identified by people with SLE to develop appropriate solutions. Unemployment, as well as unsuitable work, has adverse health outcomes. Methods Adults with SLE completed a UK-specific online survey, through the LUPUS UK website, designed to find out more about the difficulties and successes that people with SLE have in maintaining employment. The survey was predominantly qualitative, to understand participants’ employment experiences to generate possible solutions. Results Three hundred and ninety-three people gave detailed responses to the survey within eight weeks. Every respondent reported a detrimental effect of SLE on their ability to work: 40.45% had left employment because of it. The themes of concern to respondents were unambiguous: (i) the difficulties of working (and career damage) with SLE, (ii) fear and anxiety overshadowing work/family life, (iii) the greater potential to remain in some employment or stay in full employment when modifications of work pattern and support from management and colleagues were available. SLE-related fatigue, its invisibility and fluctuating nature were felt to be the main barriers to maintaining employment. Numerous respondents could work only part-time and anxiety was high regarding their future ability to continue working. Many had taken substantial pay reductions and refused offered promotions to preserve their health. Distress due to loss of work and the benefits it brings were reported by every respondent who had left work. Conclusion SLE presents specific difficulties for maintaining employment – fatigue, fluctuation and invisibility – not addressed by current anti-discrimination legislation or currently available ‘reasonable adjustments’. This study demonstrates that (i) employment is an important area of concern for people with SLE, (ii) SLE has significant detrimental effects on individuals’ ability to participate and progress in employment, (iii) legislators and employers need information about SLE as invisibility and fluctuation cause hidden problems, and (iv) more data is needed to inform workplace adjustments if individual distress and societal loss of skills are to be addressed.

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