Evidence map›Paper›PMID 34503552›Full record

ArticleTrials2021

Co-production of randomized clinical trials with patients: a case study in autologous hematopoietic stem cell transplant for patients with scleroderma.

Magda Aguiar, Tracey-Lea Laba, Sarah Munro, Tiasha Burch, Jennifer Beckett, K Julia Kaal, Nick Bansback, Marie Hudson, Mark Harrison

Open access · goldAbstract read
In one paragraph

Article in Trials, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed, 1 pooled it
0.9field-weighted citation impact, top 21% of its field
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

2 citing papers in PubMed, 1 synthesis or guideline pooled it, 6 citations in OpenAlex.

  1. Pooled it
  2. Article
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 at 5 institutions in 2 countries.

Magda AguiarFaculty of Pharmaceutical Sciences, University of British Columbia, 4625-2405 Wesbrook Mall, Vancouver, BC, V6T 1Z3, Canada.
Tracey-Lea LabaCentre for Health Economics Research and Evaluation, University Technology Sydney, Sydney, NSW, Australia.
Sarah MunroCentre for Healthcare Evaluation and Outcome Sciences, Vancouver, BC, Canada.
Tiasha BurchScleroderma Association of BC, Vancouver, BC, Canada.
Jennifer BeckettPatient Partner, Kamloops, Canada.
K Julia KaalFaculty of Pharmaceutical Sciences, University of British Columbia, 4625-2405 Wesbrook Mall, Vancouver, BC, V6T 1Z3, Canada.
Nick BansbackCentre for Healthcare Evaluation and Outcome Sciences, Vancouver, BC, Canada.
Marie HudsonArthritis Research Canada, Richmond, BC, Canada.
Mark HarrisonFaculty of Pharmaceutical Sciences, University of British Columbia, 4625-2405 Wesbrook Mall, Vancouver, BC, V6T 1Z3, Canada. mark.harrison@ubc.ca.ORCID http://orcid.org/0000-0002-2115-2447
University of British Columbia · CAJewish General Hospital · CAKamloops Art Gallery · CAUniversity of British Columbia Hospital · CAUniversity of Technology Sydney · AU

Funding

BC Support Unit HESM-001
6 · The paper itself

Abstract

backgroundIncreasingly, it is argued that clinical trials struggle to recruit participants because they do not respond to key questions or study treatments that patients will be willing or able to use. This study explores how elicitation of patient-preferences can help designers of randomized controlled trials (RCTs) understand the impact of changing modifiable aspects of treatments or trial design on recruitment.

methodsFocus groups and a discrete choice experiment (DCE) survey were used to elicit preferences of people with scleroderma for autologous hematopoietic stem cell transplant (AHSCT) treatment interventions. Preferences for seven attributes of treatment (effectiveness, immediate and long-term risk, care team composition and experience, cost, travel distance) were estimated using a mixed-logit model and used to predict participation in RCTs.

resultsTwo hundred seventy-eight people with scleroderma answered the survey. All AHSCT treatment attributes significantly influenced preferences. Treatment effectiveness and risk of late complications contributed the most to participants' choices, but modifiable factors of distance to treatment center and cost also affected preferences. Predicted recruitment rates calibrated with participation in a recent trial (33%) and suggest offering a treatment closer to home, at lower patient cost, and with holistic, multidisciplinary care could increase participation to 51%.

conclusionsThrough a patient engaged approach to preference elicitation for different features of AHSCT treatment options, we were able to predict what drives the decisions of people with scleroderma to participate in RCTs. Knowledge regarding concerns and the trade-offs people are willing to make can inform clinical study design, improving recruitment rates and potential uptake of the treatment of interest.

Indexed as

Hematopoietic Stem Cell TransplantationPatient PreferenceChoice BehaviorFocus GroupsHumansRandomized Controlled Trials as TopicSurveys and Questionnaires

Identifiers

PMID34503552
PMCPMC8428135
OpenAlexW3198242311

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.