Barriers and Motivations for Women to Participate in Cardiovascular Trials

Cheung, Angela M.; Lee, Yuna; Kapral, Moira K.; Scher, Judite; Ho, Irene; Lui-Yee, Doris; Stewart, Donna E.

doi:10.1016/s1701-2163(16)32802-x

Cited by 31 publications

(32 citation statements)

References 24 publications

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“…First, almost all prior studies of participation have examined studies involving treatments (Chang, Hendricks, Slawsky, & Locastro, 2004; Cheung et al, 2008; Gammelgaard, Mortensen, & Rossel, 2004; Groeneveld, Proper, van der Beek, Hildebrandt, & van Mechelen, 2009; Henzlova, Blackburn, Bradley, & Rogers, 1994; Irewall et al, 2014; Lakerveld et al, 2008; Mattson, Curb, & McArdle, 1985; Toft et al, 2007), while few studies have explored motivations to participate in prospective observational studies (Daniels et al, 2006; Mein et al, 2012; Patterson, Duhig, Connell, & Scott, 2014; Vecchi Brumatti et al, 2013), in which subjects gain no direct benefit. Since observational studies help to describe the natural course of a medical condition or other phenomenon, they often inform next-step treatment studies.…”

Section: Introductionmentioning

confidence: 99%

Understanding motivations to participate in an observational research study: Why do patients enroll?

Soule

Beale

Suarez

et al. 2016

Social Work in Health Care

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By understanding common motivations for participating in observational research studies, clinicians may better understand the perceived benefits of research participation from their clients’ perspective. We enrolled 164 cardiac patients in a study about the effects of gratitude and optimism. Two weeks post-enrollment, participants completed a four-item questionnaire regarding motivations for study enrollment. Altruistic motivation ranked highest, while intellectual, health-related, and financial motivations rated lower. Four subgroups of participants emerged, each with distinct characteristics and different priorities for participating. These findings may help front-line clinicians to understand which motivations for participation apply to their clients who enroll in non-treatment-based research projects.

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Section: Introductionmentioning

confidence: 99%

Understanding motivations to participate in an observational research study: Why do patients enroll?

Soule

Beale

Suarez

et al. 2016

Social Work in Health Care

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“…28 The top answers were personal health benefits (82.2%), interest in research (44.1%), and the possibility of benefiting society (29.1%). Although everybody might be interested in benefiting themselves and society, not everyone would agree regarding the usefulness of studies.…”

Section: Discussionmentioning

confidence: 99%

Avoidance and Inhibition Do Not Predict Nonrespondent Bias Among Patients With Inflammatory Bowel Disease

Cámara

Begré

Känel

2011

Journal of Epidemiology

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BackgroundIt has been suggested that participant withdrawal from studies can bias estimates. However, this is only possible when withdrawers and nonwithdrawers differ in an important way. We tested the hypothesis that withdrawers are more likely than nonwithdrawers to be avoidant and negatively affected.MethodsA total of 1160 participants with inflammatory bowel disease were recruited at different sites in Switzerland. Their levels of avoidance coping and negative affectivity were rated by means of 2 short baseline questionnaires. One year later, they were sent a longer follow-up questionnaire. The primary outcome was return versus non-return of the follow-up questionnaire within 3 months. After controlling for potential confounders identified in an extensive literature search, we estimated the odds of returning the follow-up questionnaire for 1 standard deviation of avoidance coping and negative affectivity.ResultsThe odds ratio for 1 standard deviation was 1.03 (95% confidence interval: 0.89–1.18) for avoidance coping and 1.02 (0.89–1.17) for negative affectivity.ConclusionsThe odds of returning the questionnaires did not depend on avoidance coping or negative affectivity.

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“…Studies in patients with cancer and cardiovascular disease identify mistrust of experimental methods and randomization as major barriers to trial participation. 1,15 Risk of taking placebo or off-label medication use are often identified as threats to trial recruitment when there is a placebo control arm or commercially available therapeutic with a different FDA indication. Our data suggests that these are not major barriers to trial enrollment in this rare disease; although it is conceivable that people who are taking drugs off label may be less likely to respond to questionnaires.…”

Section: Discussionmentioning

confidence: 99%

“…For women in general, the major perceived barriers to participation in clinical trials include increased burden on health and time, inconvenience of appointments, and increased risk of harm. 1–3 Barriers and benefits involved in participating in randomized controlled trials of patients with cancer (representative of chronic, terminal diseases of large population size) have also been well studied and the major barriers include fear of trials, competing clinical trials, and information overload. 4 In women with gynecologic malignancies, distrust of trials and time burdens have been cited as causes for unwillingness to participate.…”

Section: Introductionmentioning

confidence: 99%

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Predictors for clinical trial participation in the rare lung disease lymphangioleiomyomatosis

Kinder

Sherman

Young

et al. 2010

Respiratory Medicine

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Summary Background Lymphangioleiomyomatosis (LAM) is a rare, progressive and frequently lethal cystic lung disease that almost exclusively affects women and has no proven therapies. An improved understanding of the pathogenesis has identified promising molecular targets for clinical trials. Although barriers, modifiers, and benefits for clinical trial participation in common diseases such as cancer have been studied, we are unaware of such evaluations concerning rare diseases. Methods We performed a survey of a population-based registry of 780 LAM subjects in North America to identify predictors of trial participation. Logistic regression analysis evaluated the association of demographic and clinical features with trial participation. Results 41 of 263 (16%) LAM patient respondents in North America had participated in a clinical trial. Age, disease duration, lack of any college education, use of oxygen therapy, and presentation without chest pain were associated with trial participation in unadjusted analyses. Multivariate analyses indicate that patient age was the strongest independent predictor for trial participation (OR = 2.07, p = 0.004 per decade greater of patient age). Common reasons reported against trial participation included not meeting enrollment criteria (44%), drug toxicity (25%), and stable disease (20%). The most frequent reason reported for trial participation was to help future patients (85%). Conclusions Study entry criteria, drug toxicity, and stability of disease are barriers to trial enrollment among subjects with LAM. Older LAM patients and those with more advanced disease are more likely to have participated in clinical trials. Altruism is commonly a motivating factor.

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Barriers and Motivations for Women to Participate in Cardiovascular Trials

Cited by 31 publications

References 24 publications

Understanding motivations to participate in an observational research study: Why do patients enroll?

Understanding motivations to participate in an observational research study: Why do patients enroll?

Avoidance and Inhibition Do Not Predict Nonrespondent Bias Among Patients With Inflammatory Bowel Disease

Predictors for clinical trial participation in the rare lung disease lymphangioleiomyomatosis

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