ArticleJournal of empirical research on human research ethics : JERHRE2018
Development and Preliminary Testing of the Perceived Benefit and Burden Scales for Cancer Clinical Trial Participation.
Article in Journal of empirical research on human research ethics : JERHRE, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 2 of them syntheses 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, 2 syntheses or guidelines pooled it.
- Descriptions of risks and benefits of HIV vaccine trials in low-and middle-income countries (LMICs): an integrative review.BMC medical ethics · 2025Pooled it
- The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review.Journal of palliative medicine · 2019Pooled it
- Development and initial validation of a scale assessing sources of decision hesitation in patients with lung cancer invited to participate in drug clinical trials.Asia-Pacific journal of oncology nursing · 2026Article
- Article
- Sponsor- vs. FDA-Initiated Changes to Pediatric Clinical Trial Protocols: A Comparison of Associated Participant Burden.Therapeutic innovation & regulatory science · 2025Article
- Participants' perceptions support the coexistence of benefits and burdens of cancer clinical trial participation.Journal of psychosocial oncology · 2025Article
- Does financial compensation matter for research participation in prevention trials in Tanzania? Perspectives of healthy volunteers.PloS one · 2025Article
- Article
- Association of Perceived Benefit or Burden of Research Participation With Participants' Withdrawal From Cancer Clinical Trials.JAMA network open · 2022Article
- Key considerations to reduce or address respondent burden in patient-reported outcome (PRO) data collection.Nature communications · 2022Review
- Key recruitment and retention strategies for a pilot web-based intervention to decrease obesity risk among minority youth.Pilot and feasibility studies · 2019Article
- Informed Consent among Clinical Trial Participants with Different Cancer Diagnoses.AJOB empirical bioethicsArticle
- Cancer Clinical Trial Patient-Participants' Perceptions about Provider Communication and Dropout Intentions.AJOB empirical bioethicsArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
Abstract
We developed measures of benefits and burdens of research participation in cancer clinical trials using a sequential mixed methods design with a qualitative ( n = 32) and quantitative sample ( n = 110) of cancer clinical trial participants. Benefit-burden items (22 for benefits, 23 for burdens) were subsequently developed and assessed through cognitive interviewing for content, clarity, and meaning. Preliminary psychometric analyses support the internal consistency reliability and construct validity of Benefit (α = .90) and Burden (α = .87) research participation scales. Item response theory models supported the discrimination ability of the items on the scales. Participants who had thoughts of dropping out had lower Benefit scale scores ( p < .001) and higher Burden scores ( p < .001) than those who had no thoughts of dropping out, supporting construct validity. With further psychometric testing, the scale can be used to develop appropriate interventions to address recruitment and retention of human participants in clinical research.
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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.