Dataset Information

Drivers and barriers to patient participation in RCTs.

ABSTRACT:

Background

Recruitment of patients into randomised clinical trials (RCTs) is essential for treatment evaluation. Appreciation of the barriers and drivers towards participation is important for trial design, communication and information provision.

Method

As part of an intervention to facilitate effective multidisciplinary team communication about RCTs, cancer patients completed two study-specific questionnaires following trial discussions. One questionnaire examined reasons why patients accepted or declined trial entry, the other perceptions about their health-care professionals' (HCPs) information giving.

Results

Questionnaires were completed by 74% (358/486) of patients approached; of these 81% (291/358) had joined an RCT, 16% (56/358) had declined and 3% (11/358) were undecided. Trial participation status of the 128 patients not returning questionnaires is unknown. Trial acceptance was not dependent on disease stage, tumour type, sex or age. Satisfaction with trial information and HCPs' communication was generally very good, irrespective of participation decisions. The primary reason given for trial acceptance was altruism (40%; 110/275), and for declining, trust in the doctor (28%; 12/43). Decliners preferred doctors to choose their treatment rather than be randomised (54% vs 39%; P<0.027). Acceptors were more likely to perceive doctors as wanting them to join trials (54% vs 30%; P<0.001). Trial type, that is, standard treatment vs novel or different durations of treatment, also influenced acceptance rates.

Conclusion

The drivers and barriers to trial participation are partly related to trial design. Unease about randomisation and impact of duration on treatment efficacy are barriers for some. Altruism and HCPs' perceived attitudes are powerful influencing factors.

SUBMITTER: Jenkins V

PROVIDER: S-EPMC3629425 | biostudies-literature | 2013 Apr

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Drivers and barriers to patient participation in RCTs.

Jenkins V V Farewell V V Farewell D D Darmanin J J Wagstaff J J Langridge C C Fallowfield L L

British journal of cancer 20130319 7

<h4>Background</h4>Recruitment of patients into randomised clinical trials (RCTs) is essential for treatment evaluation. Appreciation of the barriers and drivers towards participation is important for trial design, communication and information provision.<h4>Method</h4>As part of an intervention to facilitate effective multidisciplinary team communication about RCTs, cancer patients completed two study-specific questionnaires following trial discussions. One questionnaire examined reasons why pa ...[more]

PMID: 23511558

Similar Datasets

Project description:Background and Objectives: Endometriosis causes significant personal and societal burden. Despite this, research funding lags behind other chronic conditions. Determining where to prioritise these limited funds is therefore vital. Research priorities may also differ between individuals with endometriosis and clinicians/researchers. The aim of this research project is to explore research priorities and factors shaping participation in endometriosis research from the perspective of people with endometriosis in Australia. Materials and Methods: Four focus groups involving 30 people with endometriosis were conducted and analysed using qualitative inductive content analysis. Results: Two categories were developed from the data: unmet research needs and motivators and barriers to participation in endometriosis research. Participants expressed interest in developing non-invasive diagnostic tools and a more multidisciplinary or holistic approach to treatment. Participants urgently desired research on treatment options for symptom management, with many prioritising non-hormonal treatments, including medicinal cannabis and complementary medicine. Others prioritised research on the causes of endometriosis over research on treatments to assist with prevention and eventual cure of the disease. The main drivers for participating in endometriosis research were hope for symptom improvement and a reduction in time to diagnosis. Research design features that were important in supporting participation included ease of access to testing centres (e.g., for blood tests) and sharing test results and automated data collection reminders, with simple stra-tegies to record data measurements. Research incentives for younger people with endometriosis and a broad dissemination of information about research projects was considered likely to increase participant numbers. Barriers included time commitments, a lack of flexibility around research appointments for data collection, travel or work commitments, concerns about the safety of some products, and trying to conceive a child. Conclusions: People with endometriosis were open to participating in research they felt aligned with their needs, with a significant focus on diagnostic tools and symptom relief. However, researchers must co-design approaches to ensure convenience and flexibility for research participation.

Project description:Nature-based tourism has the potential to enhance global biodiversity conservation by providing alternative livelihood strategies for local people, which may alleviate poverty in and around protected areas. Despite the popularity of the concept of nature-based tourism as an integrated conservation and development tool, empirical research on its actual socioeconomic benefits, on the distributional pattern of these benefits, and on its direct driving factors is lacking, because relevant long-term data are rarely available. In a multi-year study in Wolong Nature Reserve, China, we followed a representative sample of 220 local households from 1999 to 2007 to investigate the diverse benefits that these households received from recent development of nature-based tourism in the area. Within eight years, the number of households directly participating in tourism activities increased from nine to sixty. In addition, about two-thirds of the other households received indirect financial benefits from tourism. We constructed an empirical household economic model to identify the factors that led to household-level participation in tourism. The results reveal the effects of local households' livelihood assets (i.e., financial, human, natural, physical, and social capitals) on the likelihood to participate directly in tourism. In general, households with greater financial (e.g., income), physical (e.g., access to key tourism sites), human (e.g., education), and social (e.g., kinship with local government officials) capitals and less natural capital (e.g., cropland) were more likely to participate in tourism activities. We found that residents in households participating in tourism tended to perceive more non-financial benefits in addition to more negative environmental impacts of tourism compared with households not participating in tourism. These findings suggest that socioeconomic impact analysis and change monitoring should be included in nature-based tourism management systems for long-term sustainability of protected areas.

Project description:Background: Since 2013, there has been a dramatic increase in the number of preprint servers available online. To date, little is known about the position of researchers, funders, research performing organisations and other stakeholders with respect to this fast-paced landscape. In this article, we explore the benefits and challenges of preprint posting, along with issues such as infrastructure and financial sustainability. We also discuss the definition of a 'preprint' in different communities, and the impact this has on further uptake. Methods: This study is based on 38 detailed semi-structured interviews of key stakeholders based on a purposive heterogeneous sampling approach. Interviews were undertaken between October 2018 and January 2019. These were recorded, transcribed and subjected to thematic analysis to identify trends. Interview questions were designed based on Innovation Diffusion Theory, which is also used to interpret the results of this study. Results: Our study is the first using empirical data to understand the new wave of preprint servers and found that early and fast dissemination is the most appealing feature of the practice. The main concerns are related to the lack of quality assurance and the 'Ingelfinger rule'. We identified trust as an essential enabler of preprint posting and stress the enabling role of Twitter in showcasing preprints and enabling comments on these. Conclusions: The preprints landscape is evolving fast and disciplinary communities are at different stages in the innovation diffusion process. The landscape is characterised by significant experimentation, which leads to the conclusion that a one-size-fits-all approach to preprints is not feasible. Cooperation and active engagement between the stakeholders involved will play an important role in the future. In our paper, we share questions for the further development of the preprints landscape, with the most important being whether preprint posting will develop as a publisher- or researcher-centric practice.

Project description:Numerous studies have detailed the physical health benefits of children's participation in sport and a growing body of research also highlights the benefits for mental health. Children who participate in sport have also been shown to be advantaged academically. However, despite the benefits there is evidence that children are leading increasingly sedentary lifestyles and are at greater risk of chronic disease than those with active lifestyles. Sport provides an important means for children to achieve their recommended amount of daily physical activity. This systematic review asks 'what are those barriers to children's participation in sport?'Literature searches were carried out in June 2015 using; EMBASE, Medline, CINAHL and SportDiscus using the search terms barrier*, stop*, prevent*, participat*, taking part, Sports/, sport*, "physical education", PE, child*, young person*, adolescen*. These were supplemented with hand searches. A total of 3434 records were identified of which 22 were suitable for inclusion in the review, two additional studies were identified from Google Scholar in November 2016. Both qualitative and quantitative studies were included. Study's included in the review assessed children up to 18 years of age. Study quality was assessed using Critical Appraisal Skills Programme (CASP) tools.Studies took place in the school environment (n = 14), sports club (n = 1), community setting (n = 8) and adolescent care setting (n = 1). Frequently reported barriers across quantitative studies were 'time' (n = 4), 'cost' (n = 3), 'opportunity/accessibility' (n = 3) and 'friends' (n = 2). Frequently reported barriers across qualitative studies were 'time' (n = 6), 'cost' (n = 5), 'not being good at sport' (n = 6) and 'fear of being judged/embarrassed' (n = 6).Policy makers, parents and teachers should all be aware that 'cost' and 'time' are key barriers to participation in sport. More local sports opportunities are needed where costs are reduced. Schools and local clubs could better work together to provide more affordable local opportunities to increase children's participation in sport.

Dataset Information

Drivers and barriers to patient participation in RCTs.

Background

Method

Results

Conclusion

Publications

Drivers and barriers to patient participation in RCTs.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets