Trial reportTrials2016
"I didn't really understand it, I just thought it'd help": exploring the motivations, understandings and experiences of patients with advanced lung cancer participating in a non-placebo clinical IMP trial.
Trial report in Trials, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 3 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
22 citing papers in PubMed, 3 syntheses or guidelines pooled it, 40 citations in OpenAlex.
- Benefits and Burdens of Research Participation: A Mixed Methods Systematic Review in Palliative and End-of-Life Care.Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association · 2025Pooled it
- Pooled it
- Factors that impact on recruitment to randomised trials in health care: a qualitative evidence synthesis.The Cochrane database of systematic reviews · 2020Pooled it
- Trial
- Trial
- Exploring the experiences of stroke patients treated with transcranial magnetic stimulation for upper limb recovery: a qualitative study.BMC neurology · 2020Trial
- Patient understanding and acceptability of an early lung cancer diagnosis trial: a qualitative study.Trials · 2018Trial
- Participation in a trial in the emergency situation: a qualitative study of patient experience in the UK WOLLF trial.Trials · 2018Trial
- Staff experiences of closing out a clinical trial involving withdrawal of treatment: qualitative study.Trials · 2017Trial
- Publication Rate and Discontinuation Percentage of Registered Trials Involving Rotator Cuff Pathology.Orthopaedic journal of sports medicine · 2026Article
- Cancer Care Experiences Among Adolescents, Caregivers, and Health Care Providers in a Regional Canadian Context: Protocol for a Qualitative Study.JMIR research protocols · 2025Article
- Decoding clinical trial jargon: helping people understand the efficacy end points used in cancer trials.Future oncology (London, England) · 2025Article
- Trusting relationships between patients with non-curative cancer and healthcare professionals create ethical obstacles for informed consent in clinical trials: a grounded theory study.BMC palliative care · 2023Article
- Article
- Patients' experiences of the decision-making process for clinical trial participation.Nursing & health sciences · 2022Article
- Article
- Oncology patients' experiences in experimental medicine cancer trials: a qualitative study.BMJ open · 2021Article
- Rescuing Informed Consent: How the new "Key Information" and "Reasonable Person" Provisions in the Revised U.S. Common Rule open the door to long Overdue Informed Consent Disclosure Improvements and why we need to walk Through that door.Science and engineering ethics · 2020Article
- Article
- Patients' reasoning regarding the decision to participate in clinical cancer trials: an interview study.Trials · 2018Article
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 at 2 institutions in 1 country.
Funding
Abstract
backgroundFew studies have explored in depth the experiences of patients with advanced cancer who are participating in clinical investigational medicinal product trials. However, integrated qualitative studies in such trials are needed to enable a broader evaluation of patient experiences in the trial, with important ethical and practical implications for the design and conduct of similar trials and treatment regimes in the future.
methodsTen participants were recruited from the control and intervention arms of FRAGMATIC: a non-placebo trial for patients with advanced lung cancer. Participants were interviewed at up to three time points during their time in the trial. Interviews were analysed using Interpretive Phenomenological Analysis.
resultsPatients were motivated to join the trial out of hope of medical benefit and altruism. Understanding of randomisation was mixed and in some cases poor, as was appreciation of trial purpose and equipoise. The trial was acceptable to and evaluated positively by most participants; participants receiving the intervention focused on the potential treatment benefits they hoped they would receive, whilst participants in the control arm found alternative reasons, such as altruism, personal fulfilment and positive attention, to commit to and perceive benefits from the trial. However, whilst experiences were generally very positive, poor understanding, limited engagement with trial information and focus on treatment benefits amongst some participants give cause for concern.
conclusionsBy exploring longitudinally the psychological, emotional and cognitive domains of trial participation, we consider potential harms and benefits of participation in non-placebo trials amongst patients with advanced lung cancer and identify several implications for future research with and care for patients with advanced cancer.
trial registrationISRCTN80812769 . Registered on 8 July 2005.
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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.