Patient Experiences, Satisfaction, and Expectations with Current Systemic Lupus Erythematosus Treatment: Results of the SLE-UPDATE Survey

Birt, Julie; Hadi, Monica A; Sargalo, Nashmel; Brookes, Ella; Swinburn, P.; Hanrahan, Leslie; Tse, Karin; Bello, Natalia; Griffing, Kirstin; Silk, Maria E; Delbecque, Laure; Kamen, Diane L.; Askanase, Anca

doi:10.1007/s40744-021-00328-6

Cited by 7 publications

(11 citation statements)

References 29 publications

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“…The scientific community does not know accurately the perception of our patients regarding the knowledge of the disease, just as the relationship between patients and the disease. Adherence to therapy, the impact on quality of life and work productivity, the relationship with and knowledge of the disease, and the interaction with healthcare providers and treatments are identified as major challenges in this area [ 9 – 17 ]. For this reason, it was decided to carry out a survey in 2020 conducted by the Spanish Lupus Federation (FELUPUS), about the perceptions and experiences of patients with SLE, in order to give voice to the patient and understand their future needs.…”

Section: Introductionmentioning

confidence: 99%

An online survey of the Spanish Lupus Patient Association (FELUPUS): patient perceptions and experiences

et al. 2023

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Objectives A survey conducted by the Spanish Lupus Federation (FELUPUS) shows the results on perceptions and experiences of the people who live with lupus in Spain. The information was gathered anonymously from May 21 st to June 30 th , 2020. The aim of the study was to monitor the impact of the disease on quality of life, as well as to measure the impact of organ damage in lupus patients. Methods A national survey was conducted among people with lupus living in Spain who belong to the Spanish Lupus Patient Association (FELUPUS). Online interviews of approximately 25 min were completed. The information was gathered anonymously from May 21 st to June 30 th , 2020. Results One thousand two hundred sixty-three interviews were completed. 92% had a diagnosis of Systemic Lupus Erythematosus (SLE) and 8% of Cutaneous Lupus Erythematosus (CLE); 95% of the patients surveyed were female. Most of the patients claimed they stay up late, exercising and work/study were the most limited actions due to the disease. 73% of patients considered that there was little knowledge of the disease by society and at the time of diagnosis, the patient’s level of knowledge about lupus was low in 92% of them. Regarding organ damage, many patients did not understand the concept of chronicity and irreversibility of the term, relating it erroneously to acute symptoms like fatigue (38%), joint pain (47%) and even to the presence of cutaneous symptoms such as the presence of oral ulcers (17%). Conclusions The survey highlighted the need for disease awareness campaigns, greater involvement of healthcare professionals and the need to provide more information to lupus patients from the time of diagnosis. Nationally and to our knowledge, this is the survey with the largest number of participants ( N = 1263) conducted in patients with lupus. Key Points • A national survey was conducted among people with lupus living in Spain and belonging to patient associations in Spain (FELUPUS). • Nationally and to our knowledge, this is the survey with the largest number of participants (N = 1263) conducted in patients with lupus. • Most of the patients claimed they stay up late, exercising and work/study were the most limited actions due to the disease. • 73% of patients considered that there is little knowledge of the disease by society and at the time of diagnosis, the patient’s level of knowledge about lupus was low in 92% of them. Supplementary Information The online version contains supplementary material available at 10.1007/s10067-023-06500-3.

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Section: Introductionmentioning

confidence: 99%

An online survey of the Spanish Lupus Patient Association (FELUPUS): patient perceptions and experiences

et al. 2023

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“…They found that the level of S100B was significantly increased in the cerebrospinal fluid of patients with multiple sclerosis in the acute phase, while the level of S100B protein was found to be lower in the stable phase of the disease, suggesting that this protein is not limited to nerve tissue [ 30 , 31 ]. Since then, its distribution has been found in specific cell types of nonneural tissue [ 32 ]. Some scholars have found that the levels of S100B mRNA in cerebral cortex and adipose tissue are very similar [ 33 ].…”

Section: Discussionmentioning

confidence: 99%

“…In the experimental model of traumatic brain injury, the expression of S100B protein and mRNA increased in the injured tissue. In the same model, inhibition of the protein can reduce behavioral and pathological changes [ 32 ]. Moreover, intracerebroventricular injection of S100B has also been reported to induce dentate neurogenesis and improve cognitive function in the model of experimental traumatic brain injury (lateral fluid shock) [ 31 ].…”

Section: Discussionmentioning

confidence: 99%

Clinical Value of Serum Neuron-Specific Enolase Combined with Serum S100B Protein in the Diagnosis of Systemic Lupus Erythematosus

Chen

Cheng²,

Zhang

et al. 2022

Contrast Media & Molecular Imaging

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Objective. To investigate the clinical value of serum neuron-specific enolase (NSE) combined with serum S100B protein in the diagnosis of systemic lupus erythematosus (SLE). Methods. Sixty patients with SLE treated in our hospital from January 2019 to April 2021 were enrolled as the study group. According to the degree of activity, the study group was assigned into three groups: mild activity group (n = 20), moderate activity group (n = 20), and severe activity group (n = 20). A total of 60 healthy people who underwent physical examination in our hospital in the same period were enrolled as the control group. The NSE and serum S100B protein were detected in the two groups, and the correlation between serum nerve-specific enolase and serum S100B protein and the clinical value in the diagnosis of SLE were analyzed. Results. First of all, we compared the general data of the two groups. There was no significant difference in sex, age, marital status, and education level, and no significant difference was exhibited ( p > 0.05). There was no significant difference in sex, age, marital status, and education level among mild activity group, moderate activity group, and severe activity group, and no significant difference in data was exhibited ( p > 0.05). Secondly, we compared the levels of serum S100B protein and NSE. The levels of serum S100B protein and NSE in the study group were higher compared to the control group ( p < 0.05). The levels of serum S100B protein and NSE in patients with different activity levels of SLE were compared. The levels of serum S100B protein and NSE in mild activity group < moderate activity group < severe activity group were significantly different ( p < 0.05). Correlation analysis between serum S100B, NSE levels, and SLE activity indicated that serum S100B and NSE levels were positively correlated with SLE activity. With the increase of SLE activity, serum S100B and NSE levels gradually increased, and the data difference was statistically significant (r = 0.855, 0.844, p < 0.05). Finally, we established the logistic prediction model, take the probability of generating prediction as the analysis index, and draw the ROC curve to evaluate the diagnostic value of different combinations to SLE. The highest AUC and sensitivity of the two indexes in the diagnosis of SLE were 0.773 and 0.836, respectively. The levels of serum S100B protein and NSE have a certain value in the diagnosis of SLE, while the combined diagnosis is of higher value, sensitivity, and specificity in the diagnosis of SLE. Conclusion. Serum S100B protein and NSE are very sensitive indexes to judge the damage of central nervous system. However, due to the small number of cases in this study, there were as many as 19 kinds of NPSLE classification, so the relationship between serum S100B protein, NSE levels, and various NPSLE and their exact application value in diagnosing the disease and judging the prognosis needs to be confirmed by expanding the number of cases.

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“…4 Pain and fatigue are independent factors associated with unemployment and disability, 5 and patients with SLE often report these symptoms to be the most challenging to self-manage and the most important treatment goals. 6 However, pain and fatigue remain largely unaddressed despite treatment advances. 7 8 Multiple factors have been found to cause, exacerbate or mitigate pain and fatigue in patients with SLE.…”

Section: Lupus Science and Medicinementioning

confidence: 99%

“…Not only do these symptoms occur in patients with active lupus, they are also reported by patients who have, otherwise, the disease under control 4. Pain and fatigue are independent factors associated with unemployment and disability,5 and patients with SLE often report these symptoms to be the most challenging to self-manage and the most important treatment goals 6. However, pain and fatigue remain largely unaddressed despite treatment advances 7 8…”

Section: Introductionmentioning

confidence: 99%

Cross-sectional study of the effects of self-efficacy on fatigue and pain interference in black women with systemic lupus erythematosus: the role of depression, age and education

et al. 2022

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ObjectiveWhile fatigue and pain are pervasive symptoms in SLE, self-efficacy can mitigate their intensity and impact on patients’ daily activity. We examined the relationships of these domains and their interactions with demographics and depression in black women with SLE.MethodsThis is a cross-sectional analysis of data collected among 699 black women with SLE. We used validated, self-reported measures of fatigue, pain interference, symptom self-efficacy, treatment self-efficacy and depression. Linear regression analyses were conducted to examine the relationships between each outcome (fatigue and pain interference) and each predictor (symptom self-efficacy and treatment self-efficacy), and the interaction of demographics and depression.ResultsWe found inverse associations between fatigue and each of symptom self-efficacy (slope −0.556, p<0.001) and treatment self-efficacy (slope −0.282, p<0.001), as well as between pain interference and each of symptom self-efficacy (slope −0.394, p<0.001) and treatment self-efficacy (slope −0.152, p<0.001). After adjusting for confounders, symptom self-efficacy remained significantly associated with each outcome (adjusted slope −0.241 (p<0.001) and −0.103 (p=0.008) for fatigue and pain, respectively). The amount of decrease in fatigue and pain interference differed by depression severity (p<0.05 for the interaction of symptom self-efficacy and depression). The difference in fatigue by depression widened as symptom self-efficacy increased; the adjusted fatigue scores for moderate/severe depression compared with no depression were 6.8 and 8.7 points higher at mean and high symptom self-efficacy, respectively (p<0.001). Age and education significantly changed the relationship between outcomes and self-efficacy.ConclusionsSymptom self-efficacy and treatment self-efficacy were inversely related to fatigue and pain interference in black women with SLE. Depression disproportionately increased the intensity of these outcomes. While older women with low symptom self-efficacy reported disproportionately higher pain interference, those with higher education and mean or high levels of symptom self-efficacy reported lower pain interference. These findings may help predict who might benefit most from self-efficacy-enhancing interventions.

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Patient Experiences, Satisfaction, and Expectations with Current Systemic Lupus Erythematosus Treatment: Results of the SLE-UPDATE Survey

Cited by 7 publications

References 29 publications

An online survey of the Spanish Lupus Patient Association (FELUPUS): patient perceptions and experiences

An online survey of the Spanish Lupus Patient Association (FELUPUS): patient perceptions and experiences

Clinical Value of Serum Neuron-Specific Enolase Combined with Serum S100B Protein in the Diagnosis of Systemic Lupus Erythematosus

Cross-sectional study of the effects of self-efficacy on fatigue and pain interference in black women with systemic lupus erythematosus: the role of depression, age and education

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