ArticleACR open rheumatology2019
"…Not Having the Real Support That We Need": Patients' Experiences with Ambiguity of Systemic Lupus Erythematosus and Erosion of Social Support.
Article in ACR open rheumatology, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 1 of them a synthesis 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
15 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Pooled it
- Harnessing AI and social media to understand real-world patient experiences in SLE.Lupus science & medicine · 2026Article
- Navigating uncertainty: Experience of individuals living with systemic lupus erythematosus.BMC rheumatology · 2026Article
- Validating the factor structure of the superwoman schema instrument in a cohort of black women with SLE.Lupus · 2026Article
- Observational
- A Controlled Community Study of Distress and Resilience in Women Diagnosed with Fibromyalgia and Systemic Lupus Erythematosus.Journal of clinical psychology in medical settings · 2023Article
- Listening to Patients With Lupus: Why Not Proactively Integrate the Internet as a Resource to Drive Improved Care?Journal of medical Internet research · 2023Article
- The impact of social determinants of health on the presentation, management and outcomes of systemic lupus erythematosus.Rheumatology (Oxford, England) · 2023Review
- Rethinking the Difficult Patient: Formative Qualitative Study Using Participatory Theater to Improve Physician-Patient Communication in Rheumatology.JMIR formative research · 2023Article
- Structural and health system determinants of health outcomes in systemic lupus erythematosus: Understanding the mechanisms underlying health disparities.Frontiers in public health · 2022Article
- Editorial: The Impact of Social Connections on Patients' Health.Frontiers in psychology · 2022Article
- Patient Perspective on Using Digital Resources to Address Unmet Needs in Systemic Lupus Erythematosus.Arthritis care & research · 2021Article
- Exploring intentional medication non-adherence in patients with systemic lupus erythematosus: the role of physician-patient interactions.Rheumatology advances in practice · 2021Article
- Associations of Arthritis-Attributable Interference with Routine Life Activities: A Modifiable Source of Compromised Quality-of-Life.ACR open rheumatology · 2019Article
- Development of a digital toolkit to improve quality of life of patients with systemic lupus erythematosus.Digital healthArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
Abstract
objectiveThe patient-specific experience of living with SLE is underreported, particularly when studying factors associated with health-related quality of life (HRQOL). Recent work has suggested that biomedical interventions are only partially predictive of HRQOL measures. A qualitative analysis of patient-specific experiences can uncover additional root causes of impaired HRQOL in SLE populations beyond the scope of quantitative questionnaires.
methodsConsented adult patients with American College of Rheumatology- or Systemic Lupus International Collaborating Clinics-classified SLE were recruited. Ten semi-structured interviews were conducted across six participants. Interviews were audio recorded, transcribed, and analyzed using an iterative process. Findings were presented to an interactive public forum with SLE patients family members and friends of patients, and health care professionals to assess accuracy.
resultsFour themes emerged from the interviews: 1) ambiguity, inconsistency, and lack of symptom predictability due to SLE disease courses, 2) poor communication with family/friends/partners, and poor bi-directional communication between health care providers and patients (informational support), 3) lack of validation for patients' experiences (appraisal support), and 4) problematic aspects of social support including negative support and patients' inability to reciprocate support due to role changes. Data also indicate a reciprocal association between appraisal and informational sources of support.
conclusionFindings indicate that inadequate appraisal and informational support from informal and formal sources are salient factors influencing HRQOL among SLE patients. Findings also point to the necessity of integrating community organizations, physicians, and friends and family of SLE patients into capacity building interventions aimed at enhancing these sources of social support.
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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.