Dataset Information

Positive Attitudes and Therapeutic Misconception Around Hypothetical Clinical Trial Participation in the Huntington's Disease Community.

ABSTRACT:

Background

New therapies that could modify the disease course of Huntington's disease (HD) are entering clinical trials. However, conceptions about clinical research from the HD community are unknown. This knowledge could help inform patient-clinician discussions surrounding clinical trial participation.

Objective

The purpose of this study was to assess clinical trial attitudes and understanding in the HD community.

Methods

We developed a survey incorporating two measures of trial understanding and attitudes and the impact of therapeutic route of administration on hypothetical trial participation. The survey was distributed via emails, flyers, and social media through HD-related organizations.

Results

There were 73 responses. Individuals self-reported as clinically diagnosed with HD, gene positive but asymptomatic, or primary caregivers. Respondents viewed clinical trials positively and generally viewed trials as safe. Individuals with prior HD-related research experience were less likely to have negative expectations about trials than those without research experience (p?=?0.002), and women had higher information needs than men (p?=?0.001). Individuals with HD were more likely than the other groups to experience therapeutic misconception (p?=?0.002). All respondents were able to appraise risks and benefits of research but exhibited optimism about trial outcomes. Willingness to participate was highest when the route of administration was minimally invasive.

Conclusions

While the HD community views clinical trials positively, patients with HD are at high risk for therapeutic misconception and all groups are optimistic about trial outcomes. Limitations of this study include a small sample that may be inclined to view research positively given past trial participation and interest in participating in HD surveys. However, the findings from this study can be used to strengthen informed consent during HD clinical trial recruitment.

SUBMITTER: Cotter K

PROVIDER: S-EPMC6839474 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Positive Attitudes and Therapeutic Misconception Around Hypothetical Clinical Trial Participation in the Huntington's Disease Community.

Cotter Kristina K Siskind Carly E CE Sha Sharon J SJ Hanson-Kahn Andrea K AK

Journal of Huntington's disease 20190101 4

<h4>Background</h4>New therapies that could modify the disease course of Huntington's disease (HD) are entering clinical trials. However, conceptions about clinical research from the HD community are unknown. This knowledge could help inform patient-clinician discussions surrounding clinical trial participation.<h4>Objective</h4>The purpose of this study was to assess clinical trial attitudes and understanding in the HD community.<h4>Methods</h4>We developed a survey incorporating two measures o ...[more]

PMID: 31594242

Similar Datasets

Project description:IntroductionAs Zika virus infection during pregnancy can cause a range of congenital anomalies, pregnant women may be a target population for vaccination in future outbreaks. Their inclusion in vaccine trials is critical to ensure safe and effective vaccines in pregnancy. Though many vaccine candidates are in development, pregnant women's willingness to participate in Zika virus vaccine research is unknown. This study aims to describe pregnant women's attitudes toward Zika virus vaccine research participation, as well as perceived barriers to and facilitators of enrollment.MethodsPregnant and recently postpartum women (n = 128) attending prenatal care at Massachusetts General Hospital completed surveys querying their willingness to participate in four hypothetical Zika virus vaccine trials and their motivations for participation. Demographics, information on prior Zika virus exposure, and vaccine acceptance were collected.ResultsMost women (77%) accepted participation in at least one hypothetical Zika virus vaccine trial, and women were significantly more likely to accept prospective enrollment in an inactivated vaccine trial compared to a live-attenuated vaccine trial (p-value <0.0001) or a nucleic acid-based vaccine trial (p-value <0.0444). Important motivators for participation included evidence from research with pregnant and non-pregnant people, a desire to protect the baby from Zika, perceptions of vaccine safety, and provider recommendation.ConclusionsA majority of women in this cohort were willing to participate in a Zika virus vaccine trial while pregnant, however, differences in acceptance exist between vaccine platforms. The high value placed on evidence by participants highlights the importance of gathering and communicating pregnancy-specific data to potential research participants and their providers. Women's motivations for accepting research participation during pregnancy are important to inform the Zika virus vaccine research agenda, candidate prioritization, and trial design.

Project description:PurposeTherapeutic misconception is the tendency for a clinical trial participant to overlook the scientific objective of a clinical trial and instead believe that an experimental intervention is intended for personal therapeutic benefit. We sought to evaluate this tendency in the setting of a clinical trial of a new radiation therapy technology.MethodsPatients with left-sided, node positive breast cancer enrolled in a randomized clinical trial evaluating intensity modulated radiation therapy with deep inspiration breath hold (IMRT-DIBH) versus 3-dimensional conformal radiation therapy (3DCRT). Patients who enrolled completed surveys at baseline, after randomization, and upon completion of radiation therapy to evaluate expectations, satisfaction, and experiences.ResultsForty women participated in the survey study, with 20 in each arm. Most participants endorsed the perception that participation in the trial might result in better treatment than the current standard treatment (77%) and more medical attention than being off trial (54%). At baseline, most women (74%) believed that a new treatment technology is superior than an established one. Before randomization, 43% of participants believed IMRT-DIBH would be more effective than standard treatment with 3DCRT, none believed that 3DCRT would be more effective, 23% believed that they would be the same, and 34% did not know. None believed that IMRT-DIBH would cause worse long-term side effects, whereas 37% thought that 3DCRT would. Most (71%) reported that they would choose to be treated with IMRT-DIBH; none would have elected 3DCRT if given a choice. Nearly half (44%) in the 3DCRT arm wished that they had been assigned to the IMRT-DIBH arm; none in the IMRT-DIBH arm expressed a wish for crossover.ConclusionsMost participants reported the perception that trial participation would result in better treatment and more medical attention than off trial, hallmarks of therapeutic misconception. Our observations provide empirical evidence of a fixed belief in the superiority of new technology and highlight the importance of adjusting expectations through informed consent to mitigate therapeutic misconception.

Project description:This study examined the relationships between the attitudes and the management behaviour of the farmer and the on-farm welfare of their ewes. To our knowledge, this is the first study investigating these relationships in extensive sheep farming systems. Thirty-two sheep farmers and 6200 ewes were sampled across Victoria, Australia. Questionnaire interviews and on-farm animal welfare assessments were conducted. The ewes were assessed at two-time points, mid-pregnancy and weaning. To examine relationships between farmer and ewe variables, categorical principal component analyses, correlations and logistic regressions were used. The main findings of this study indicate relationships between farmer attitudes and management behaviour, consistent with findings from other more intensive livestock industries. Farmers were more likely to check the body condition of their ewes (Odds ratio = 2.37, P = 0.03), perform ultrasound pregnancy diagnosis (Odds ratio = 1.16, P = 0.02) and test for egg count before deworming sheep (Odds ratio = 2.88, P = 0.01) if they perceived these activities were important/valuable. In addition, farmers that performed these activities had a more active management style, and ewes in better welfare: fewer lame ewes at mid-pregnancy (r = -0.38 P = 0.04), and fewer ewes in need of further care at mid-pregnancy and weaning respectively (r = -0.47, P = 0.01; r = -0.50, P = 0.01). When combining the qualitative and quantitative analyses, behavioural attitudes (attitudes towards specific management behaviours) and perceived behavioural control (perceived barriers to performing the behaviour) emerged as the two main drivers underpinning farmer management behaviour. The results of this study indicate that the way farmers manage their ewes influences welfare outcomes, and management decisions are influenced by attitudes towards management practices. These findings demonstrate the opportunity to create change in farmer management behaviour and improve sheep welfare via targeted education programs.

Project description:BackgroundPatients in Yemen commonly visit community pharmacies to obtain consultation or treatment for common ailments. Community pharmacists have an opportunity to optimize medication use and improve patient outcomes. This study aimed to evaluate the attitudes and practices of community pharmacists regarding their participation in public health activities and barriers to their participation in these activities.MethodsThis cross-sectional study was carried out among community pharmacists working in pharmacies located in urban areas of the Aden governorate of Yemen from March to June 2017 using a self-administered questionnaire. We selected pharmacies from a line list using proportional sampling according to the number of pharmacies in the urban areas of each district. The questionnaire contained four sections: demographic characteristics, attitudes, practices, and barriers encountered. Data were analyzed descriptively, and the Chi-square test was used for analyzing the association of variables (alpha?=?0.05).ResultsThe questionnaire was distributed to 200 community pharmacists working in community pharmacies. Of the 200 respondents, 62% (n?=?124) were male. Overall, the mean age (sd) was 30.0?years (8.6) with the number of years of work experience between 2 and 9.9?years (n?=?158, 79%). On average, 62.3% of the pharmacists had a positive attitude toward participation in public health activities. Providing education to stop tobacco chewing, smoking, alcohol drinking and improve oral hygiene was an important activity of the community pharmacists. Blood pressure measurements (86%, n?=?172) and glucose tests (45%, n?=?90) were commonly conducted for clients. Lack of time (71%, n?=?142) and lack of teamwork (70%, n?=?140) were mentioned as common barriers to participation in public health activities.ConclusionsCommunity pharmacists had a positive attitude toward public health activities. Health education and routine health tests were important practices of the community pharmacists. Barriers need to be overcome to enable more active participation by community pharmacists in public health activities by consulting with all stakeholders, assessing the situation, considering alternatives and taking action.

Project description:Recruitment into clinical research studies is a major challenge. This study was carried out to explore the perceptions and attitudes towards clinical research participation among the general public in Qatar. A population based questionnaire study was carried out at public events held in Qatar. Residents of Qatar, 18 years or above in age were surveyed, anonymously, following verbal consent. Descriptive and multivariate analyses were conducted. We administered 2517 questionnaires to examine clinical research participation, of which 2379 complete forms were analyzed. Those who had previously been approached to participate in research completed a more detailed assessment. Data showed that only 5.7% participants (n = 134) had previously been approached to participate in a clinical research study. Of these 63.4% (n = 85) had agreed to participate while 36.6% (n = 49) had declined. The main reasons for declining participation included: time constraint (47.8%, n = 11), 'fear' (13.0%, n = 3), lack of awareness about clinical research (8.7%, n = 2) and lack of interest (8.7%, n = 2). 'To help others' (31.8%, n = 27) and 'thought it might improve my access to health care' (24.7%, n = 21) were the prime motivators for participation. There was a general agreement among participants that their previous research experience was associated with positive outcomes for self and others, that the research conduct was ethical, and that opportunities for participation will be welcomed in future. More than ten years of stay within Qatar was a statistically significant determinant of willingness to participate, adjusted odds ratio 5.82 (95% CI 1.93-17.55), p = 0.002. Clinical research participation in Qatar needs improvement. Time constraints, lack of trust in and poor awareness about clinical research are main barriers to participation. Altruism, and improved health access are reported as prime motivators. Deeper insight in to the factors affecting clinical research participation is needed to devise evidence based policies for improvement in recruitment strategies.

Dataset Information

Positive Attitudes and Therapeutic Misconception Around Hypothetical Clinical Trial Participation in the Huntington's Disease Community.

Background

Objective

Methods

Results

Conclusions

Publications

Positive Attitudes and Therapeutic Misconception Around Hypothetical Clinical Trial Participation in the Huntington's Disease Community.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure