Barriers to participation in clinical trials of cancer: a meta-analysis and systematic review of patient-reported factors

Mills, Edward J.; Seely, Dugald; Rachlis, Beth; Griffith, Lauren; Wu, Ping; Wilson, Kumanan; Ellis, Peter; Wright, James R.

doi:10.1016/s1470-2045(06)70576-9

Cited by 470 publications

(444 citation statements)

References 55 publications

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“…12 Patient-related factors have been identified to explain this, such as a lack of understanding about research or medical condition; concerns with the research process, especially randomisation; preference for particular treatments; and a perception that research is inappropriate for serious medical conditions. 16,20,21 In clinical trials of surgical procedures, these issues are more pronounced, 22 especially where surgical interventions are being compared with medical treatment. 23 Understanding the attitudes, beliefs, and insights of potential trial subjects can be helpful in recognising barriers to trial recruitment, and can be used to inform strategies to overcome these.…”

Section: Introductionmentioning

confidence: 99%

The willingness of patients presenting with advanced glaucoma to participate in a trial comparing primary medical vs primary surgical treatment

Leighton

Lonsdale

Tildsley

et al. 2011

Eye

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Aim The aim of this study is to examine the attitudes of patients, who presented with advanced glaucoma in at least one eye, to participation in a randomised prospective trial comparing primary medical treatment with primary surgical treatment for advanced glaucoma. Methods Patients who had presented with advanced glaucoma (415 dB loss mean deviation on Humphrey visual field testing) in at least one eye were asked to participate. Five focus groups comprising of 4-8 patients and consisting of 29 patients in total were undertaken. The group interviews were conducted by two experienced qualitative researchers, an ophthalmic clinician was present to clarify technical issues. The focus group discussions were taped and transcribed in full, and analysed through a process of familiarisation, open (inductive) coding, theme generation, theme refinement, and thematic mapping. Results Three overarching themes were identified: (1) the extent of patients' knowledge, (2) anxieties about surgery, and (3) concerns about compromised care due to trial involvement; these themes were further classified into eight sub-themes. Conclusions Patients' willingness to participate in randomised clinical studies is significantly connected to their level of comprehension and insight about the medical condition, its treatment, and the research process; misunderstandings about any of these aspects may act as a significant barrier to trial recruitment. Recruitment rates for future randomised trials may be enhanced by ensuring that patients have full and accurate information about the treatment alternatives, and that uncertainty exists for best patient outcomes between treatment options, and reassuring potential participants that the research process, in particular randomisation, will not compromise clinical care.

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Section: Introductionmentioning

confidence: 99%

The willingness of patients presenting with advanced glaucoma to participate in a trial comparing primary medical vs primary surgical treatment

Leighton

Lonsdale

Tildsley

et al. 2011

Eye

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“…Dans le domaine des essais cliniques, de nombreux travaux se sont focalisés sur les attitudes des patients et les raisons individuelles qui les conduisent à participer -ou refuser de participer -à un essai [7]. Même si le recours à la randomisation nécessite une information approfondie, la majorité des patients atteints de cancer sont réceptifs à la proposition de participation à un essai clinique [8] et apprécient la prise en charge structurée proposée dans le cadre de tels essais thé-rapeutiques [9].…”

Section: Les Essais Cliniques : Souhait De Propositions Et D'implicatunclassified

“…Dans notre expérience, l'existence d'activités de recherche aux côtés des activités purement cliniques était souvent connue des patients avant leur venue dans le CLCC ; sinon, elle a été rapidement identifiée par les patients et vécue positivement. Les trois-quarts des patients de notre enquête déclaraient que l'existence d'une activité de recherche est « assurément un critère de qualité pour les soins » [4] et, parmi les dix-neuf patients qui ont eu un entretien de recherche approfondi [6] Le fait de ne pas souhaiter être sollicité pour participer à un essai peut s'expliquer par la nécessité de décider soi-même de participer ou non, qui peut être considérée par certains patients comme une barrière [7]. Ainsi, plus de 10 % des participants à un essai randomisé comparant deux chimiothérapies laisseraient leur médecin décider seul de leur participation à un nouvel essai hypothétique [12].…”

Section: Perception Par La Population Et Les Patients De L'existenceunclassified

La recherche biomédicale à l’ère des tumorothèques

et al. 2012

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“…Much of the information presented to a patient is complex, incorporating translational research, biomarker selection, and sophisticated study designs into trials [5] but the level of health literacy remains low in the adult United State population [6]. Fewer than 5% of adult cancer patients enroll in clinical trials [7]; the most commonly cited barriers being the lack of awareness or knowledge of clinical trials [8][9][10][11][12][13][14] and the reluctance to be randomized [15][16][17][18][19].…”

Section: Introductionmentioning

confidence: 99%

YouTube Videos as a Source of Information About Clinical Trials: Observational Study (Preprint)

Hillyer¹,

MacLean²,

Beauchemin³

et al. 2018

Preprint

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BackgroundClinical trials are essential to the advancement of cancer treatment but fewer than 5% of adult cancer patients enroll in a trial. A commonly cited barrier to participation is the lack of understanding about clinical trials. ObjectiveSince the Internet is a popular source of health-related information and YouTube™ is the second most visited website in the world, we examined the content of the top 115 YouTube™ videos about clinical trials to evaluate clinical trial information available through this medium. MethodsYouTube™ videos posted prior to March 2017 were searched using selected keywords. A snowballing technique was used to identify videos for review in which sequential screening of the autofill search results for each set of keywords was conducted. Video characteristics (e.g., number of views, length) were recorded. Content was broadly grouped as related to purpose, phases, design, safety and ethics, and participant considerations. Multivariable regression analysis was conducted to assess associations between video type (cancer vs. non-cancer) and video characteristics and content.1 ResultsIn total, 115 videos were reviewed; 46 (40.0%) cancer clinical trials videos vs. 69 (60.0%) noncancer videos. Most videos were created by healthcare organizations/cancer centers (29.6%), were oriented toward patients (58.3%) and the general public (59.1%) and were informational (68.7%); altruism was a common theme (27.0%). Compared to non-cancer videos, cancer clinical trials videos more frequently used an affective approach and mentioned benefits of

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Barriers to participation in clinical trials of cancer: a meta-analysis and systematic review of patient-reported factors

Cited by 470 publications

References 55 publications

The willingness of patients presenting with advanced glaucoma to participate in a trial comparing primary medical vs primary surgical treatment

The willingness of patients presenting with advanced glaucoma to participate in a trial comparing primary medical vs primary surgical treatment

La recherche biomédicale à l’ère des tumorothèques

YouTube Videos as a Source of Information About Clinical Trials: Observational Study (Preprint)

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