Global Public Attitudes About Clinical Research and Patient Experiences With Clinical Trials

Anderson, Annick; Borfitz, D; Getz, Kenneth A.

doi:10.1001/jamanetworkopen.2018.2969

Cited by 90 publications

(87 citation statements)

References 16 publications

(12 reference statements)

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“…Some evidence shows that research burden can be common in RCTs. For example, half the respondents in an international survey of 2194 clinical trial participants considered trial participation as disruptive to their daily routine [22]. The concept of research burden has featured prominently in recent priority-setting partnerships for trial methodology research [23,24].…”

Section: Discussionmentioning

confidence: 99%

The research burden of randomized controlled trial participation: a systematic thematic synthesis of qualitative evidence

Naidoo

Nguyen

Ravaud

et al. 2020

BMC Med

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Background: Participation in randomized controlled trials (RCTs) may be quite demanding and could represent an important burden for patients. We aimed to explore this research burden (i.e., the psychological, physical, and financial burdens) experienced by patients through their participation in a RCT. Methods: We conducted a systematic review of qualitative studies exploring adult patients' experiences with RCT participation. We searched MEDLINE (PubMed), CINAHL, PSYCHINFO, and Embase (search date March 2018) for eligible reports. Qualitative data coding and indexing were assisted by NVivo. The quality of reports was assessed by using the Critical Appraisal Skills Program (CASP) tool. Results: We included 45 qualitative studies that involved 1732 RCT participants. Important psychological burdens were identified at every stage of the trial process. Participants reported feeling anxiety and being afraid of "being a 'guinea pig'" and described undergoing randomization and allocation to a placebo as particularly difficult resulting in disappointment, anger, and depression. Patients' follow-up and trial closure were also responsible for a wide range of psychological, physical, and financial burdens. Furthermore, factors related to burdensome impacts and consequences were discerned. These factors involved trial information, poorly organized and too-demanding follow-up, and lack of appropriate management when the patient's participation ended. Trial participation was also associated with beneficial effects such as the satisfaction of feeling "useful," gaining "a sense of control," and receiving special attention. Conclusions: Our finding provides a detailed description of research burden across the whole RCT process. Many of the burdens described could be anticipated, and some avoided in a movement toward minimally disruptive clinical research. Such an approach could improve trial recruitment and retention. Review registration: PROSPERO CRD42018098994

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Section: Discussionmentioning

confidence: 99%

The research burden of randomized controlled trial participation: a systematic thematic synthesis of qualitative evidence

Naidoo

Nguyen

Ravaud

et al. 2020

BMC Med

View full text Add to dashboard Cite

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“…Time constraint was another reason for declining participation. A previous study showed that time constraint was more of a concern to younger participants due to work commitments [8]. Although the majority of our study population was above 65, this reason was voiced by about one-third of the participants.…”

Section: Discussionmentioning

confidence: 78%

“…As researchers are faced with the problem of patient participation in research globally, understanding the barriers limiting patients' interests in research is important in designing future research projects that ensure participant satisfaction and recruitment. While extensive work has been done to evaluate Western patients' perspectives, there have been only few studies representing Asian patients' attitude towards research participation, which could be due to lack of patient or physician interest as well as limited funding and infrastructure to promote research [8,9], while various Asian studies have been performed to assess attitudes of healthy subjects or mixed group of patients towards research participation [2,6,[10][11][12][13][14]; to the best of our knowledge, this is the first Asian study on Parkinson patients to understand their attitudes towards clinical research and tissue donation.…”

Section: Discussionmentioning

confidence: 99%

“…is could be attributed to their concerns about the disease and its progression as well as their hope that better treatment strategies could be discovered in their lifetime. Many studies done previously in this regard highlighted the patients' desire of wanting to know the results of the studies they participated in [1,8,17,18]. A study by Christopher et al showed that the nonpublication of trial results goes against the patients' motive of altruism or helping advance medical knowledge [17].…”

Section: Discussionmentioning

confidence: 99%

“…A study by Christopher et al showed that the nonpublication of trial results goes against the patients' motive of altruism or helping advance medical knowledge [17]. Hence, it is important to share the summarized findings of clinical research with the participants [8,19]. An even better way is to translate the research findings into clinical implications so as to help the participants understand the importance of their Reason n (%) † (1) I would like to advance medical knowledge of my condition.…”

Section: Discussionmentioning

confidence: 99%

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Attitude of Asian Parkinson Patients towards Clinical Research and Tissue Donation

Khan

Foo

Chia

et al. 2020

Parkinson's Disease

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Objective. e success of clinical research and tissue donation programs are highly dependent on recruitment of willing volunteers. A comprehensive survey of patient preferences and attitudes can help identify and address barriers hindering the recruitment for research. Method. is is a cross-sectional study on 105 Parkinson's disease patients who completed an interviewer-administered questionnaire. Results. Out of 105 respondents, 48% of patients had either already participated in clinical research or were keen to participate. About 80% believed clinical research to be safe for their health and privacy. More than 70% of participants were willing to donate blood, urine, or stool, while 16% were agreeable for cerebrospinal fluid sample donation. Motivating factors for clinical research included altruism (64%) and contribution to advance medical knowledge (64%). Common reasons for unwillingness towards clinical research included the risks involved (43%), time constraints (33%), and mobility challenges (24%). Conclusion. e attitude of Singaporean Parkinson patients toward clinical research and tissue donation is encouraging with about half of the participants willing to support clinical research. ree-quarters of patients would support tissue donations. Participation in research may be further increased with greater patient and public education to overcome misconceptions and also by limiting the demands of studies.

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Demographic and Health Behavior Factors Associated With Clinical Trial Invitation and Participation in the United States

et al. 2021

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IMPORTANCE Representative enrollment in clinical trials is critical to ensure equitable and effective translation of research to practice, yet disparities in clinical trial enrollment persist. OBJECTIVE To examine person-level factors associated with invitation to and participation in clinical trials. DESIGN, SETTING, AND PARTICIPANTS This cross-sectional study analyzed responses from 3689 US adults who participated in the nationally representative Health Information National Trends Survey, collected February through June 2020 via mailed questionnaires. EXPOSURES Demographic, clinical, and health behavior-related characteristics. MAIN OUTCOMES AND MEASURES History of invitation to and participation in a clinical trial, primary information sources, trust in information sources, and motives for participation in clinical trials were described. Respondent characteristics are presented as absolute numbers and weighted percentages. Associations between respondent demographic, clinical, and health behavior-related characteristics and clinical trial invitation and participation were estimated using survey-weighted logistic regression models. RESULTS The median (IQR) age of the 3689 respondents was 48 (33-61) years, and most were non-Hispanic White individuals (2063 [59%]; non-Hispanic Black, 452 [10%]; Hispanic, 521 [14%]), had more than a high school degree (2656 [68%]), were employed (1809 [58%]), and had at least 1 medical condition (2535 [61%]). Overall, 439 respondents (9%) had been invited to participate in any clinical trial. Respondents with increased odds of invitation were non-Hispanic Black comparedwith non-Hispanic White (adjusted odds ratio [aOR], 1.85; 95% CI, 1.13-3.02), had greater than a high school education compared with less than high school education (eg, Նcollege degree: aOR, 4.84; 95% CI, 1.89-12.39), were single compared with married or living as married (aOR, 1.68; 95% CI, 1.04-2.73), and had at least 1 medical condition compared to none (eg, 1 medical condition: aOR, 2.25; 95% CI, 1.32-3.82). Respondents residing in rural vs urban areas had 77% decreased odds of invitation to a clinical trial (aOR 0.33; 95% CI 0.17-0.65). Of invited respondents, 199 (47%) participated. Compared with non-Hispanic White respondents, non-Hispanic Black respondents had 72% decreased odds of clinical trial participation (aOR, 0.28; 95% CI, 0.09-0.87). Respondents most frequently reported "health care providers" as the first and most trusted source of clinical trial information (first source: 2297 [59%]; most trusted source: 2597 [70%]). The most frequently reported motives for clinical trials participation were "wanting to get better" (2294 [66%]) and the standard of care not being covered by insurance (1448 [41%]). CONCLUSIONS AND RELEVANCEThe findings of this study suggest that invitation to and participation in clinical trials may differ by person-level demographic and clinical characteristics. (continued) Key Points Question What person-level factors are associated with US adults' invitation to and participation ...

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Global Public Attitudes About Clinical Research and Patient Experiences With Clinical Trials

Abstract: This survey study reviews the findings of the attitudes, perceptions, and experiences of clinical trials among clinical trial participants and nonparticipants in 68 countries.

Cited by 90 publications

References 16 publications

The research burden of randomized controlled trial participation: a systematic thematic synthesis of qualitative evidence

The research burden of randomized controlled trial participation: a systematic thematic synthesis of qualitative evidence

Attitude of Asian Parkinson Patients towards Clinical Research and Tissue Donation

Demographic and Health Behavior Factors Associated With Clinical Trial Invitation and Participation in the United States

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