Evidence map›Paper›PMID 41571944›Full record

ArticleRheumatology international2026

Patient perspectives on clinical trial participation for novel advanced therapies: a focus group study in systemic lupus erythematosus.

Olivia A Stein, Jennifer L F Lee, Evelyne Vinet, Arielle Mendel, Christian A Pineau, Fares Kalache, Louis-Pierre Grenier, Leanne Mielczarek, Sasha Bernatsky

Abstract read
PubMed Publisher
In one paragraph

Article in Rheumatology international, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors.

Olivia A SteinResearch Institute of the McGill University Health Centre, 5252 de Maisonneuve, 3F.51, Montreal, QC, H4A 3S9, Canada.ORCID http://orcid.org/0009-0001-1721-6575
Jennifer L F LeeResearch Institute of the McGill University Health Centre, 5252 de Maisonneuve, 3F.51, Montreal, QC, H4A 3S9, Canada.ORCID http://orcid.org/0000-0002-5501-0017
Evelyne VinetResearch Institute of the McGill University Health Centre, 5252 de Maisonneuve, 3F.51, Montreal, QC, H4A 3S9, Canada.ORCID http://orcid.org/0000-0001-7727-5879
Arielle MendelResearch Institute of the McGill University Health Centre, 5252 de Maisonneuve, 3F.51, Montreal, QC, H4A 3S9, Canada.ORCID http://orcid.org/0000-0001-9732-616X
Christian A PineauResearch Institute of the McGill University Health Centre, 5252 de Maisonneuve, 3F.51, Montreal, QC, H4A 3S9, Canada.ORCID http://orcid.org/0000-0002-4966-1526
Fares KalacheDivision of Rheumatology, Department of Medicine, McGill University, Montreal, QC, Canada.
Louis-Pierre GrenierDivision of Rheumatology, Department of Medicine, McGill University, Montreal, QC, Canada.
Leanne MielczarekLupus Canada, Newmarket, ON, Canada.
Sasha BernatskyResearch Institute of the McGill University Health Centre, 5252 de Maisonneuve, 3F.51, Montreal, QC, H4A 3S9, Canada. sasha.bernatsky@mcgill.ca.ORCID http://orcid.org/0000-0002-9515-2802

Funding

Singer Family Fund for SLE Research Non-profit, fundraising
6 · The paper itself

Abstract

To identify barriers and facilitators in systemic lupus erythematosus (SLE) regarding participation in clinical trials for novel/advanced agents, such as cellular therapies. Adults from our SLE research registry participated in 1-hour virtual focus groups concerning their perspectives on clinical trials for novel/advanced SLE therapies. Sessions, facilitated by trained moderators, were recorded and transcribed. An inductive thematic analysis approach was used to code the data and generate themes/sub-themes. Nineteen patients participated in four focus groups (two in English, two in French). The mean age (range) was 50.0 (21–77) years and mean disease duration was 21.4 years. Most (90%) participants were female and 79% (15/19) were White, with the remainder being Black, Asian, and Hispanic. Few had previously participated in a clinical trial. Six major themes emerged: two barriers and four facilitators to trial participation. The first barrier was time and logistical constraints, such as employment and travel. The second was risk aversion, including subthemes of concerns of SLE flare, drug side effects and early-phase trials. Facilitators included receiving clear, detailed trial information. Disease instability was another driver, making patients increasingly willing to accept elevated health risks, time commitment and/or logistical challenges. Desire to support the lupus community was also an important factor. Finally, access in clinical trials to mental health counsellors, peer support, and close medical follow-up were strong facilitators of participation. We identified potential barriers and facilitators/driving factors for SLE patients regarding clinical trial participation, which are particularly relevant for novel/advanced agents like cellular therapies.

Indexed as

Clinical Trials as TopicHealth Knowledge, Attitudes, PracticeLupus Erythematosus, SystemicPatient ParticipationAdultAgedFemaleFocus GroupsHumansMaleMiddle AgedYoung AdultAttitudesCell- and tissue-based therapyClinical trials as topicFocus groupsLupus erythematosusPatient participationPatient preferenceQualitative researchSystemic

Identifiers

PMID41571944

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

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.