ArticleRheumatology advances in practice2020
Medically explained symptoms: a mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases.
Article in Rheumatology advances in practice, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 39 papers, 1 of them a synthesis that pooled it.
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Who cites it
39 citing papers in PubMed, 1 synthesis or guideline pooled it, 59 citations in OpenAlex.
- Barriers and facilitators associated with diagnostic and treatment delays in lupus in the Global South and North: a systematic review of qualitative and mixed methods studies.Rheumatology international · 2025Pooled it
- [Survey of care situation for patients with systemic lupus erythematosus and systemic sclerosis with pulmonary involvement in Rhineland-Palatinate and Saarland].Zeitschrift fur Rheumatologie · 2026Article
- What do we know about medical invalidation and related concepts? - A scoping review and thematic analysis about the definitions, measurements, causes, consequences and potential solutions for medical invalidation.BMC health services research · 2026Article
- Precision medicine's blind spot: Rebalancing the evidence base to reflect women's health.Science advances · 2026Review
- Visual Hallucinations and Illusions as Missed Diagnostic Clues in Autoimmune Disease: A Patient Perspective.Journal of patient experience · 2026Article
- Article
- Perspectives on label-free microscopy of heterogeneous and dynamic biological systems.Journal of biomedical optics · 2025Article
- A Case Report in Using a Laboratory-Based Decision Support Alert for Research Enrollment and Randomization.Applied clinical informatics · 2025Article
- The fourth trimester and challenges for the lupus patient.EULAR rheumatology open · 2025Review
- Maternal immune-mediated conditions and ADHD risk in offspring.BMC medicine · 2025Article
- 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
- Neuropsychiatric symptoms in systemic lupus erythematosus: mixed methods analysis of patient-derived attributional evidence in the international INSPIRE project.Rheumatology (Oxford, England) · 2025Article
- Review
- 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
- [Current patient care of systematic lupus erythematosus in Rhineland-Palatinate and Saarland].Zeitschrift fur Rheumatologie · 2024Article
- Autoimmune Health Crisis: An Inclusive Approach to Addressing Disparities in Women in the United States.International journal of environmental research and public health · 2024Review
- An exploratory study of the damage markers NfL, GFAP, and t-Tau, in cerebrospinal fluid and other findings from a patient cohort enriched for suspected autoimmune psychiatric disease.Translational psychiatry · 2024Article
- Patient-reported outcome measures for systemic lupus erythematosus: an expert Delphi consensus to guide implementation in routine care.BMC rheumatology · 2024Article
Corrections and comments
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Authors and funding
8 authors at 4 institutions in 2 countries.
Funding
Abstract
objectivesThe aim was to explore patient experiences and views of their symptoms, delays in diagnosis, misdiagnoses and medical support, to identify common experiences, preferences and unmet needs.
methodsFollowing a review of LUPUS UK's online forum, a questionnaire was posted online during December 2018. This was an exploratory mixed methods study, with qualitative data analysed thematically and combined with descriptive and statistically analysed quantitative data.
resultsThere were 233 eligible respondents. The mean time to diagnosis from first experiencing symptoms was 6 years 11 months. Seventy-six per cent reported at least one misdiagnosis for symptoms subsequently attributed to their systemic autoimmune rheumatic disease. Mental health/non-organic misdiagnoses constituted 47% of reported misdiagnoses and were indicated to have reduced trust in physicians and to have changed future health-care-seeking behaviour. Perceptions of physician knowledge and listening skills were highly correlated with patient ratings of trust. The symptom burden was high. Fatigue had the greatest impact on activities of daily living, yet the majority reported receiving no support or poor support in managing it. Assessing and treating patients holistically and with empathy was strongly felt to increase diagnostic accuracy and improve medical relationships.
conclusionPatient responses indicated that timely diagnosis could be facilitated if physicians had greater knowledge of lupus/related systemic autoimmune diseases and were more amenable to listening to and believing patient reports of their symptoms. Patient priorities included physicians viewing them holistically, with more emotional support and assistance in improving quality of life, especially in relation to fatigue.
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Registered trials
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