Adolescent knowledge and attitudes related to clinical trials

Brown, Devin L.; Cowdery, Joan E.; Jones, Toni Stokes; Langford, Aisha T.; Gammage, Catherine; Jacobs, Teresa L.

doi:10.1177/1740774515571443

Cited by 13 publications

(16 citation statements)

References 12 publications

(14 reference statements)

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“…Participants who felt more knowledgeable about research or perceived greater benefits of research participation were more willing to participate in research, and these results are consistent with prior research 17,38 . Our findings are consistent with research identifying misconceptions about clinical trials, which is common across many different populations 39,40 in the United States, not only the Black community 41–43 . While greater than 85% of participants were aware of informed consent procedures and voluntary participation, most participants were unaware that clinical trials often involve random assignment to a treatment or control group, and many participants did not know some clinical trials could utilize placebo controls.…”

Section: Discussionsupporting

confidence: 86%

Willingness to participate in research among black patients with liver disease: A national cross‐sectional study

McGuire¹,

André

Bradsher

et al. 2021

Journal of Viral Hepatitis

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In the United States, Black people are disproportionately diagnosed with hepatitis C virus (HCV) compared with White people but are under‐represented in HCV studies. In this US‐based cross‐sectional telephone survey study, we assessed willingness to participate (WTP) in health/medical research and attitudes and beliefs that may influence WTP among Black patients with HCV. Two hundred participants who had current or prior HCV diagnosis and self‐identified as Black or African American were recruited from a national HCV cohort study and an outpatient hepatology clinic. WTP responses ranged from 1 (not at all willing) to 5 (very willing). Multivariable models were used to identify factors associated with the overall mean WTP score. In addition, an open‐ended question solicited strategies to help increase research participation from the Black community. Overall, participants reported moderate WTP in research (Mean [95% Confidence Interval (CI)] = 3.78 [3.68, 3.88]). Of 13 types of research presented, participants reported lowest WTP for randomized controlled trials of medications (Mean [95% CI] = 2.31 [2.11, 2.50]). The initial multivariable model identified higher subjective knowledge of research as positively associated with WTP (Parameter estimate [95% CI] = 0.15 [0.02, 0.27]). Sensitivity analyses also identified higher perceived benefits of research as an additional factor associated with WTP. Qualitative findings indicate that greater community‐based outreach efforts would increase accessibility of research opportunities. When given the opportunity to participate, Black participants with HCV reported moderate WTP in health/medical research. Research sponsors and investigators should employ community‐based outreach to expand access and awareness of research opportunities.

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Section: Discussionsupporting

confidence: 86%

Willingness to participate in research among black patients with liver disease: A national cross‐sectional study

McGuire¹,

André

Bradsher

et al. 2021

Journal of Viral Hepatitis

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“…This consisted of four items to assess participant demographics (age, gender, race, and ethnicity) and a pre-existing set of questions in five domains related to clinical trials: attitudes (20 items), knowledge (13 items), perceived ability/self-efficacy (9 items), receptivity to hear about (1 item), and intention to participate in (1 item) clinical trials [22]. This survey was originally developed to address cancer clinical trials and was previously adapted to include more generic language for presumably healthy individuals [23]. To establish internal consistency of the instrument for a healthy, adolescent and young adult sample, Cronbach’s alpha coefficients were calculated for the 20 attitude and 9 self-efficacy items and were acceptable at 0.84 and 0.91, respectively.…”

Section: Methodsmentioning

confidence: 99%

Effectiveness of a short video-based educational intervention on factors related to clinical trial participation in adolescents and young adults: a pre-test/post-test design

Cowdery

Powell

Fleming

et al. 2019

Trials

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BackgroundPoor clinical trial enrollment continues to be pervasive and is especially problematic among young adults and youth, and among minorities. Efforts to address barriers to enrollment have been predominantly focused on adult diseased populations. Because older adults may already have established attitudes, it is imperative to identify strategies that target adolescents and young adults. The purpose of this study was to test the effectiveness of an educational video on factors related to clinical trial participation among a healthy adolescent and young adult population.MethodsParticipants completed a 49-item pre-test, viewed a 10-min video, and completed a 45-item post-test to assess changes in attitudes, knowledge, self-efficacy, receptivity to, and intention to participate (primary outcome) in clinical trials. Descriptive statistics, paired samples t-tests, and Wilcoxon signed-rank tests were conducted.ResultsThe final analyses included 935 participants. The mean age was 20.7 years, with almost 70% aged 18 to 20 years. The majority were female (73%), non-Hispanic (92.2%), white (70%), or African American (20%). Participants indicated a higher intention to participate in a clinical trial (p < 0.0001) and receptivity to hearing more about a clinical trial (p < 0.0001) after seeing the video. Intention to participate (definitely yes and probably yes) increased by an absolute 18% (95% confidence interval 15–22%). There were significant improvements in attitudes, knowledge, and self-efficacy scores for all participants (p < 0.0001).ConclusionsThe results of this study showed strong evidence for the effectiveness of a brief intervention on factors related to participation in clinical trials. This supports the use of a brief intervention, in a traditional educational setting, to impact the immediate attitudes, knowledge, self-efficacy, and intention to participate in clinical trial research among diverse, healthy adolescents and young adults.

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“…Yet despite the importance of participation by adolescents, relatively little is known regarding how and why young people decide to participate in clinical trials, especially in the field of mental health, or how they then experience involvement in such studies [ 2 ]. A recent study by Brown et al [ 3 ] noted that adolescents are under-represented in clinical trials generally and that ‘little is known about adolescents’ knowledge and attitudes surrounding clinical trials’ (p. 213). Brown et al’s own questionnaire survey of 82 high school students in Michigan found that only 33 % of those surveyed had ever heard of a clinical trial, and understanding about trials was poor.…”

Section: Introductionmentioning

confidence: 99%

The experience of adolescents participating in a randomised clinical trial in the field of mental health: a qualitative study

Midgley

Isaacs

Weitkamp

et al. 2016

Trials

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BackgroundThis descriptive study aimed to investigate adolescents’ motivations for participating in a randomised controlled trial (RCT), to explore the understanding that the young people had regarding a number of aspects of the trial design, to examine whether or not they found participation in the trial to be acceptable and what affected this, and to identify whether and how the young people felt that their participation in the RCT impacted on their experience of therapy and on therapeutic change.MethodsSeventy-six adolescents who were taking part in a large-scale RCT to evaluate the clinical and cost effectiveness of psychological therapies for depression were interviewed at two time-points after completing therapy. The semi-structured interviews, which included a focus on the young people’s experience of the research study, were analysed using framework analysis.ResultsThe vast majority of adolescents found it acceptable to participate in the clinical trial, and many agreed to participate for reasons of ‘conditional altruism’. However consent was often given without great understanding of the key elements of the trial, including the difference between treatment arms and the randomisation process. Although the adolescents were largely positive about their experiences from taking part, the study raises questions about whether clinical outcomes may be influenced by participation in the research elements of the trial.ConclusionsAlthough adolescents are under-represented in clinical trials, those who do participate are generally positive about the experience; however, careful thought needs to be given to key elements of the trial design and the potential impact of the research participation on clinical outcomes.Trial registrationISRCTN registry, ISRCTN83033550. Registered on 15 October 2009.

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Adolescent knowledge and attitudes related to clinical trials

Abstract: Educational interventions directed toward adolescents that address knowledge, attitudes, and distrust in order to improve clinical trial awareness and receptivity overall are needed and may represent a tool to address disparities in minority enrollment in clinical trials.

Cited by 13 publications

References 12 publications

Willingness to participate in research among black patients with liver disease: A national cross‐sectional study

Willingness to participate in research among black patients with liver disease: A national cross‐sectional study

Effectiveness of a short video-based educational intervention on factors related to clinical trial participation in adolescents and young adults: a pre-test/post-test design

The experience of adolescents participating in a randomised clinical trial in the field of mental health: a qualitative study

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