The patient’s perspective: are quality of life and disease burden a possible treatment target in systemic lupus erythematosus?

Kernder, Anna; Elefante, Elena; Chehab, Gamal; Tani, Chiara; Mosca, Marta; Schneider, Matthias

doi:10.1093/rheumatology/keaa427

Cited by 36 publications

(23 citation statements)

References 56 publications

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“…SLEDAI-2K). 29 However, other measurements of inflammation, such as proinflammatory cytokines, are consistently associated with fatigue in both SLE and other autoimmune diseases. 3 There are several underlying mechanisms which are thought to contribute to fatigue in autoimmune diseases, mainly through brain inflammation.…”

Section: Discussionmentioning

confidence: 99%

Fatigue in patients with systemic lupus erythematosus and neuropsychiatric symptoms is associated with anxiety and depression rather than inflammatory disease activity

Monahan

Voorde

Eikenboom

et al. 2021

Lupus

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Introduction We aimed to investigate risk factors for fatigue in patients with systemic lupus erythematosus (SLE) and neuropsychiatric symptoms in order to identify potential interventional strategies. Methods Patients visiting the neuropsychiatric SLE (NPSLE) clinic of the Leiden University Medical Center between 2007–2019 were included. In a multidisciplinary consensus meeting, SLE patients were classified as having neuropsychiatric symptoms of inflammatory origin (inflammatory phenotype) or other origin (non-inflammatory phenotype). Fatigue was assessed with the SF-36 vitality domain (VT) since 2007 and the multidimensional fatigue inventory (MFI) and visual analogue scale (VAS) since 2011. Patients with a score on the SF-36 VT ≥1 standard deviation (SD) away from the mean of age-related controls of the general population were classified as fatigued; patients ≥2 SD away were classified as extremely fatigued. Disease activity was measured using the SLE disease activity index-2000. The influence of the presence of an inflammatory phenotype, disease activity and symptoms of depression and anxiety as measured by the hospital anxiety and depression scale (HADS) was analyzed using multiple regression analyses corrected for age, sex and education. Results 348 out of 371 eligible patients filled in questionnaires and were included in this study . The majority was female (87%) and the mean age was 43 ± 14 years. 72 patients (21%) had neuropsychiatric symptoms of an inflammatory origin. Fatigue was present in 78% of all patients and extreme fatigue was present in 50% of patients with an inflammatory phenotype vs 46% in the non-inflammatory phenotype. Fatigue was similar in patients with an inflammatory phenotype compared to patients with a non-inflammatory phenotype on the SF-36 VT (β: 0.8 (95% CI −4.8; 6.1) and there was less fatigue in patients with an inflammatory phenotype on the MFI and VAS (β: −3.7 (95% CI: −6.9; −0.5) and β: −1.0 (95% CI −1.6; −0.3)). There was no association between disease activity and fatigue, but symptoms of anxiety and depression (HADS) associated strongly with all fatigue measurements. Conclusion This study suggests that intervention strategies to target fatigue in (NP)SLE patients may need to focus on symptoms of anxiety and depression rather than immunosuppressive treatment.

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Section: Discussionmentioning

confidence: 99%

Fatigue in patients with systemic lupus erythematosus and neuropsychiatric symptoms is associated with anxiety and depression rather than inflammatory disease activity

Monahan

Voorde

Eikenboom

et al. 2021

Lupus

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“…Although dsDNA and/or complement are accurate biomarkers in some patients, that is not the case for all patients [ 33 ]. This research builds on previous reports [ 26 ] that greater prioritization should be given to patient-reported symptoms. Patient self-reported symptoms are often the least susceptible to external verification, yet can be the most life-changing (fatigue, pain, neurological and cognitive difficulties) [ 15 ].…”

Section: Discussionmentioning

confidence: 82%

Medication decision-making and adherence in lupus: patient–physician discordance and the impact of previous ‘adverse medical experiences’

et al. 2021

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Objectives Medication adherence is critical in the successful management of lupus. There is very limited existing literature on reasons why non-adherence is not reported. This study explores the impact of current and previous medical experiences on patient satisfaction, adherence and reporting of non-adherence. Methods Mixed methodology involved thematic analysis of in-depth interviews (N = 23) to further explore the statistically analysed quantitative survey findings (N = 186). Results This study identified five themes: 1) physician-patient discordance and a ‘hierarchy of evidence’ in medication decisions, 2) the association of adherence with satisfaction with care, 3) the persisting impact of past Adverse Medical Experiences (AMEs), 4) the dynamic balance of patient-physician control, and 5) holistic care – beyond a purely medication- based focus. Improving quality of life (43% of participants) and a supportive medical relationship (24%) were the main reasons for adherence. Patient-priorities and self-reported symptoms were perceived as less important to physicians than organ-protection and blood results. Non-reporters of non-adherence, non-adherers and those with past AMEs (e.g. psychosomatic misdiagnoses) had statistically significant lower satisfaction with care. The importance of listening to patients was a key component of every theme, and associated with patient satisfaction and adherence. The mean rating for rheumatologist’s listening skills was 2.88 for non-adherers compared to 3.53 for other participants (mean difference 0.65, P = 0.003). Conclusion Patients would like more weight and discussion given to self-reported symptoms and quality of life in medication decisions. Greater understanding and interventions are required to alleviate the persisting impact of past AMEs on some patients’ wellbeing, behaviour and current medical relationships.

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“…In contrast, SLEDAI or BILAG do not correlate with fatigue." [51] T5 expressed a similar sentiment when describing a results passage they were reading: "I am not going to act like I understand what any of this means. .…”

Section: Observations Of Non-expert Readersmentioning

confidence: 90%

Paper Plain: Making Medical Research Papers Approachable to Healthcare Consumers with Natural Language Processing

August¹,

Wang²,

Bragg³

et al. 2022

Preprint

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When seeking information not covered in patient-friendly documents, like medical pamphlets, healthcare consumers may turn to the research literature. Reading medical papers, however, can be a challenging experience. To improve access to medical papers, we introduce a novel interactive interface-Paper Plain 1 -with four features powered by natural language processing: definitions of unfamiliar terms, in-situ plain language section summaries, a collection of key questions that guide readers to answering passages, and plain language summaries of the answering passages. We evaluate Paper Plain, finding that participants who use Paper Plain have an easier time reading and understanding research papers without a loss in paper comprehension compared to those who use a typical PDF reader. Altogether, the study results suggest that guiding readers to relevant passages and providing plain language summaries, or "gists, " alongside the original paper content can make reading medical papers easier and give readers more confidence to approach these papers. CCS Concepts: • Human-centered computing → Empirical studies in interaction design; Interactive systems and tools; User studies.

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The patient’s perspective: are quality of life and disease burden a possible treatment target in systemic lupus erythematosus?

Cited by 36 publications

References 56 publications

Fatigue in patients with systemic lupus erythematosus and neuropsychiatric symptoms is associated with anxiety and depression rather than inflammatory disease activity

Fatigue in patients with systemic lupus erythematosus and neuropsychiatric symptoms is associated with anxiety and depression rather than inflammatory disease activity

Medication decision-making and adherence in lupus: patient–physician discordance and the impact of previous ‘adverse medical experiences’

Paper Plain: Making Medical Research Papers Approachable to Healthcare Consumers with Natural Language Processing

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