ArticleLupus2021
Patient experiences and strategies for coping with SLE: A qualitative study.
Article in Lupus, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 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
13 citing papers in PubMed, 1 synthesis or guideline pooled it.
- 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
- Trial
- Navigating uncertainty: Experience of individuals living with systemic lupus erythematosus.BMC rheumatology · 2026Article
- Exploring the Perspectives of Patients Living With Lupus: Retrospective Social Listening Study.JMIR formative research · 2024Article
- The Effects of Systemic Lupus-Related Cognitive Impairments on Activities of Daily Living and Life Role Participation: A Qualitative Framework Study.ACR open rheumatology · 2024Article
- Canadian patient experiences of lupus nephritis: a qualitative analysis.Lupus science & medicine · 2023Article
- Experiences and Perspectives of Children and Young People Living with Childhood-Onset Systemic Lupus Erythematosus-An Integrative Review.Children (Basel, Switzerland) · 2023Review
- The Outcomes of an e-Wellness Program for Lupus Patients in Thailand: A Participatory Action Research Approach.Journal of preventive medicine and public health = Yebang Uihakhoe chi · 2023Article
- Uncertainty and its related coping strategies in systemic lupus erythematosus. Life in the fog.Journal of education and health promotion · 2023Article
- Coping with systemic lupus erythematosus in patients' words.Lupus science & medicine · 2022Article
- How Can We Enhance Adherence to Medications in Patients with Systemic Lupus Erythematosus? Results from a Qualitative Study.Journal of clinical medicine · 2022Article
- Association of Coping Strategies and Medication Adherence: A Systematic Review.Innovations in pharmacy · 2022Article
- Predictors of stress in patients with Lupus.Frontiers in medicine · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
Abstract
objectiveThis study explored challenges that patients with systemic lupus erythematosus (SLE) and childhood-onset SLE (cSLE) face to identify modifiable influences and coping strategies in patient experiences.
methodsParticipants were recruited from two academic medical centers through a Lupus Registry of individuals ≥18 years old and ≥4 1997 ACR classification criteria for SLE and a centralized data repository of cSLE patients, and participated in three focus groups. Transcripts were coded thematically and adjudicated by two independent reviewers.
resultsThirteen adults, 7 (54%) with cSLE, participated in focus groups. Themes were categorized into two domains: (1) challenges with SLE diagnosis and management; and (2) patient coping strategies and modifiable factors of the SLE experience. Participants identified five primary challenges: diagnostic odyssey, public versus private face of SLE, SLE-related stresses, medication adherence, and transitioning from pediatric to adult care. Coping strategies and modifiable factors included social support, open communication about SLE, and strong patient-provider relationships. Several participants highlighted positive lessons learned through their experiences with SLE, including empathy, resilience, and self-care skills.
conclusionsPatients with cSLE and SLE identified common challenges, modifying influences and coping strategies based on personal experiences. A strong patient-provider relationship and trust in the medical team emerged as key modifiable factors. Deriving optimism from experiences with SLE was unique to several patients diagnosed as children or young adults. Leveraging factors that improved the participants' experiences living with SLE may be used in future studies to address vulnerabilities in care.
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.