ArticleLupus2018
Individuals living with lupus: findings from the LUPUS UK Members Survey 2014.
Article in Lupus, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 49 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
49 citing papers in PubMed, 2 syntheses or guidelines pooled it, 81 citations in OpenAlex.
- The 2026 British Society for Rheumatology guideline for the management of children, young people and adults with systemic lupus erythematosus.Rheumatology (Oxford, England) · 2026Guideline
- Diet and Systemic Lupus Erythematosus (SLE): From Supplementation to Intervention.International journal of environmental research and public health · 2022Pooled it
- ARE WE MISSING LUPUS IN MALES? EVIDENCE OF COGNITIVE BIAS FROM A RANDOMIZED EXPERIMENT IN THE UNITED STATES.American journal of epidemiology · 2022Trial
- What Does It Mean to Be a British Isles Lupus Assessment Group-Based Composite Lupus Assessment Responder? Post Hoc Analysis of Two Phase III Trials.Arthritis & rheumatology (Hoboken, N.J.) · 2021Trial
- Barriers to physical activity in patients with systemic lupus erythematosus in the UK.Clinical rheumatology · 2026Article
- Observational
- Living with systemic lupus erythematosus in 2024: Latin American experience based on a patient survey.Clinical rheumatology · 2026Article
- Unmet Needs of Systemic Lupus Erythematosus (SLE) Patients: Insights from a Needs Assessment Study.Pharmacy (Basel, Switzerland) · 2025Article
- Predictors of patient-reported outcomes phenotypes in SLE during remission: a cluster analysis approach.Lupus science & medicine · 2025Article
- Addressing the challenge of global delays in diagnosis and treatment of systemic lupus erythematosus.Nature reviews. Rheumatology · 2025Review
- Challenges in the diagnosis of systemic lupus erythematosus.Clinical medicine (London, England) · 2025Review
- Article
- 'I still can't forget those words': mixed methods study of the persisting impact on patients reporting psychosomatic and psychiatric misdiagnoses.Rheumatology (Oxford, England) · 2025Article
- Prediction of Lupus Classification Criteria via Generative AI Medical Record Profiling.Biotech (Basel (Switzerland)) · 2025Article
- Neuropsychiatric symptoms in systemic lupus erythematosus: mixed methods analysis of patient-derived attributional evidence in the international INSPIRE project.Rheumatology (Oxford, England) · 2025Article
- Misdiagnosis, Missed Diagnosis, and Delayed Diagnosis of Lupus: A Qualitative Study of Rheumatologists.Arthritis care & research · 2024Article
- Understanding the impact of delayed diagnosis and misdiagnosis of systemic lupus erythematosus (SLE).Journal of family medicine and primary care · 2024Review
- Patient-reported outcome measures for systemic lupus erythematosus: an expert Delphi consensus to guide implementation in routine care.BMC rheumatology · 2024Article
- Challenges and opportunities in access to care for systemic lupus erythematosus patients across Europe and worldwide.Rheumatology (Oxford, England) · 2024Review
- The Multiple Faces of Systemic Lupus Erythematosus: Pearls and Pitfalls for Diagnosis.Mediterranean journal of rheumatology · 2024Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Systemic lupus erythematosus (SLE) is a complex and unpredictable disease which varies greatly among patients and has a significant impact on an individual's daily living and quality of life. A better understanding of the patients' experiences with the disease is vital to the effective management of the disease. LUPUS UK, a national UK-registered charity supporting people with systemic and discoid lupus, conducted a UK-wide survey of individuals living with lupus in order to provide foundation information to support and identify gaps needing further research. An anonymous survey was sent to 5660 LUPUS UK members in order to obtain demographic, diagnosis, symptom and treatment information. A total of 2527 surveys were returned by 2371 females (mean age 56.9 years, SD 13.6) and 156 males, (mean age 60.9 years, SD 15.7). Individuals reported a mean (SD) time to diagnosis from the first symptom of 6.4 (9.5) years, with 47% ( n = 1186) initially being given a different diagnosis prior to lupus. Fatigue/weakness (91%, n = 2299) and joint pain/swelling (77.4%, n = 1957) were the most common symptoms that interfere with daily activities, while 73% ( n = 1836) noted having some problems that make them unable to carry out their usual daily activities. Thirty-two per cent ( n = 806) were also seeking support beyond traditional pharmacological treatments, such as acupuncture and massage. This study highlights the range and frequency of symptoms difficult to live with on a daily basis and support areas needing further research to improve patients' well-being.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.