Trial reportRheumatology (Oxford, England)2021
'It is good to have a target in mind': qualitative views of patients and parents informing a treat to target clinical trial in juvenile-onset systemic lupus erythematosus.
Trial report in Rheumatology (Oxford, England), 2021. 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
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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.
- Towards development of treat to target (T2T) in childhood-onset systemic lupus erythematosus: PReS-endorsed overarching principles and points-to-consider from an international task force.Annals of the rheumatic diseases · 2023Pooled it
- Validation of childhood lupus specific targets: ensuring accurate assessment of disease control in younger, lighter paediatric patients.Rheumatology (Oxford, England) · 2025Article
- Management of childhood-onset systemic lupus erythematosus (cSLE) over the last two decades in Spain.Pediatric rheumatology online journal · 2025Review
- Childhood-Onset Systemic Lupus Erythematosus (cSLE): An International Perspective.Current allergy and asthma reports · 2024Review
- Defining remission in childhood-onset lupus: PReS-endorsed consensus definitions by an international task force.Clinical immunology (Orlando, Fla.) · 2024Article
- Experiences and Perspectives of Children and Young People Living with Childhood-Onset Systemic Lupus Erythematosus-An Integrative Review.Children (Basel, Switzerland) · 2023Review
- PReS-endorsed international childhood lupus T2T task force definition of childhood lupus low disease activity state (cLLDAS).Clinical immunology (Orlando, Fla.) · 2023Article
- Targeted multiomics in childhood-onset SLE reveal distinct biological phenotypes associated with disease activity: results from an explorative study.Lupus science & medicine · 2023Article
- Rituximab in Idiopathic Pulmonary Hemosiderosis in Children: A Novel and Less Toxic Treatment Option.Pharmaceuticals (Basel, Switzerland) · 2022Article
- Improving communication of the concept of 'treat-to target' in childhood lupus: a public and patient (PPI) engagement project involving children and young people.BMC rheumatology · 2022Article
- Attainment of low disease activity and remission targets reduces the risk of severe flare and new damage in childhood lupus.Rheumatology (Oxford, England) · 2022Article
- Comorbidity in young patients with juvenile systemic lupus erythematosus: how can we improve management?Clinical rheumatology · 2022Article
- Clinical manifestations, prognosis, and treat-to-target assessment of pediatric lupus nephritis.Pediatric nephrology (Berlin, Germany) · 2022Article
- What Have We Learnt About the Treatment of Juvenile-Onset Systemic Lupus Erythematous Since Development of the SHARE Recommendations 2012?Frontiers in pediatrics · 2022Review
- LLDAS is an attainable treat-to-target goal in childhood-onset SLE.Lupus science & medicine · 2021Article
Corrections and comments
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Authors and funding
11 authors.
Funding
Abstract
objectiveWe sought to explore patient and parental views on treatment targets, outcome measures and study designs being considered for a future JSLE treat-to-target (T2T) study.
methodsWe conducted topic-guided, semistructured interviews with JSLE patients and parents and analysed the audio recorded interviews using thematic approaches.
resultsPatients and parents differed regarding symptoms they felt would be tolerable, representing 'low disease activity'. Patients often classed symptoms that they had previously experienced, were 'invisible' or had minimal disruption on their life as signs of low disease activity. Parents were more accepting of visible signs but were concerned about potential organ involvement and symptom severity. Overall, patients and parents preferred that children were entirely asymptomatic, with no ongoing treatment side effects. They regarded fatigue as particularly challenging, requiring proper monitoring using a fatigue patient-reported outcome measure. Most families felt that reducing corticosteroids would also be a good treatment target. Overall, families liked the concept of T2T, commenting that it could help to improve disease control, help structure treatment and improve communication with clinicians and treatment compliance. They were concerned that T2T might increase the frequency of hospital visits, thus impacting upon schooling, parental employment and finances. Families made suggestions on how to modify the future trial design to mitigate such effects.
conclusionThis study provides guidance from patients and parents on T2T targets and study designs. Complementary quantitative studies assessing the achievability and impact of different targets (e.g. lupus low disease activity state or remission) are now warranted to inform an international consensus process to develop treatment targets.
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