Dataset Information

A prospective community engagement initiative to improve clinical research participation in patients with peripheral artery disease.

ABSTRACT:

Objective

Patients diagnosed with peripheral artery disease are difficult to recruit into clinical trials. However, there is currently no high-quality, patient-centered information explaining why peripheral artery disease patients choose to participate or not participate in clinical research studies.

Methods

The current study was a prospective community engagement initiative that specifically asked patients with and without peripheral artery disease: (1) what motivates them to participate in clinical research studies, (2) their willingness to participate in different research procedures, (3) the barriers to participation, (4) preferences about study design, and (5) demographic and disease-related factors influencing participation. Data were gathered through focus groups (n?=?19, participants aged 55-79?years) and mailed questionnaires (n?=?438, respondents aged 18-85?years).

Results

More than half of the respondents stated that they would be willing to participate in a study during evening or weekend time slots. Peripheral artery disease patients (n?=?45) were more willing than those without peripheral artery disease (n?=?360) to participate in drug infusion studies (48% versus 18%, p?p?ConclusionAdults in our geographic region are interested in participating in clinical research studies related to their health; they would like their doctor to tell them what studies they qualify for and they prefer to receive a one-page advertisement that has color pictures of the research procedures. Peripheral artery disease patients are more willing than those without peripheral artery disease to participate in drug infusion studies, trials of investigational drugs, microneurography, and spinal/epidural infusions.

SUBMITTER: Levenberg K

PROVIDER: S-EPMC7294489 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

A prospective community engagement initiative to improve clinical research participation in patients with peripheral artery disease.

Levenberg Kate K Proctor David N DN Maman Stephan R SR Luck J Carter JC Miller Amanda J AJ Aziz Faisal F Radtka John F JF Muller Matthew D MD

SAGE open medicine 20200613

<h4>Objective</h4>Patients diagnosed with peripheral artery disease are difficult to recruit into clinical trials. However, there is currently no high-quality, patient-centered information explaining why peripheral artery disease patients choose to participate or not participate in clinical research studies.<h4>Methods</h4>The current study was a prospective community engagement initiative that specifically asked patients with and without peripheral artery disease: (1) what motivates them to par ...[more]

PMID: 32587692

Similar Datasets

Project description:BackgroundOpen streets events, where roads are temporarily closed to motorized vehicles, can provide safe spaces for physical activity (PA) and become sustainable community infrastructure. Since 2016, we have collaborated with a rural community to implement an open streets event, named ciclovía. In 2019, ciclovía was adopted as a community-wide program. This paper describes the process of building and progressing a ciclovía from a research intervention to a community-adopted program and participation of a rural community in ciclovía.MethodsWe used community-based participatory research to foster bidirectional learning on how to optimize the content and implementation of ciclovía to be feasible and acceptable for rural communities. The community-academic partnership focused on: 1) understanding the science of ciclovía; 2) learning the implementation process; 3) creating tools to facilitate planning, implementation, and evaluation of ciclovía; and 4) developing transition steps from a research intervention to a community-adopted program.ResultsThe progression of the research intervention to community adoption spanned 2 years. First, the partnership met quarterly to discuss the science of ciclovía, its utility, and its adaptation for rural communities. Second, the partnership studied processes that facilitated ciclovía implementation. Third, the partnership created the ciclovía planning guide and tools for communities to establish their own ciclovía. The guide included forming a planning committee, setting meeting and communication plans, marketing and promotion, and selecting evaluation tools. Fourth, the transition steps from research intervention to community adoption included creating roles and responsibilities, implementing ciclovía using the planning guide, and convening listening sessions for improvement on implementation. Community attendance at ciclovía doubled from 189 individuals (126 children and 63 adults) when it was a research intervention to 394 individuals (277 children and 117 adults) when it was a community program.ConclusionsThe progression from a research intervention to a community-adopted program encompasses multiple steps that involve bidirectional learning and partnership with the community. Lessons learned from this study are integrated into a disseminatable ciclovía planning guide.

Project description:ObjectiveThis study employed the Consolidated Framework for Implementation Research (CFIR) to assess factors that enhanced or impeded the implementation of community engagement strategies using the Nigerian polio programme as a point of reference.DesignThis study was a part of a larger descriptive cross-sectional survey. The CFIR was used to design the instrument which was administered through face-to-face and phone interviews as well as a web-based data collection platform, Qualtrics.SettingThe study took place in at least one State from each of the six geopolitical zones in Nigeria (Nasarawa, Borno, Kano, Sokoto, Anambra, Bayelsa, Lagos, Ondo and Oyo States as well as the Federal Capital Territory).ParticipantsThe respondents included programme managers, policy-makers, researchers and frontline field implementers affiliated with the Global Polio Eradication Initiative (PEI) core partner organisations, the three tiers of the government health parastatals (local, state and federal levels) and academic/research institutions.ResultsData for this study were obtained from 364 respondents who reported participation in community engagement activities in Nigeria's PEI. Majority (68.4%) had less than 10 years' experience in PEI, 57.4% were involved at the local government level and 46.9% were team supervisors. Almost half (45.0%) of the participants identified the process of conducting the PEI program and social environment (56.0%) as the most important internal and external contributor to implementing community engagement activities in the community, respectively. The economic environment (35.7%) was the most frequently reported challenge among the external challenges to implementing community engagement activities.ConclusionCommunity engagement strategies were largely affected by the factors relating to the process of conducting the polio programme, the economic environment and the social context. Therefore, community engagement implementers should focus on these key areas and channel resources to reduce obstacles to achieve community engagement goals.

Project description:Background Community engagement is essential for effective research when addressing issues important to both the community and researchers. Despite its effectiveness, there is limited published evidence concerning the evaluation of community engagement in research projects, especially in the area of nephrology. Methods We developed a community engagement program in Guatemala to address the role of hydration in chronic kidney disease of unknown origin, using five key engagement principles: 1. Local relevance and determinants of health. 2. Acknowledgment of the community. 3. Dissemination of findings and knowledge gained to all partners. 4. Usage of community partners’ input. 5. Involvement of a cyclical and iterative process in the pursuit of goals. The effectiveness of community engagement was measured by a structured questionnaire on a 5-point likert scale. This measure determined how well and how often the research team adhered to the five engagement principles. We assessed internal consistency for each set of the engagement items through Omega coefficient. Results Sixty-two community leaders completed the questionnaire. Seventy-five percent were female, with a mean age of 37 years. All 5 engagement principles scored highly on the 5-point likert scale. Every item set corresponding to an engagement principles evaluation had a Omega coefficient > 0.80, indicating a firm internal consistency for all question groups on both qualitative and quantitative scales. Conclusion Engagement of the community in the kidney research provides sustainability of the efforts and facilitates the achievements of the goals. Community leaders and researchers became a team and develop a relationship in which commitment and empowerment facilitated the participation in all aspects of the research process. This initiative could be a useful tool for researchers, especially in low-middle income countries, to start research in a community, achieve objectives in a viable form, and open opportunities to further studies. Supplementary Information The online version contains supplementary material available at 10.1186/s12882-022-02891-8.

Dataset Information

A prospective community engagement initiative to improve clinical research participation in patients with peripheral artery disease.

Objective

Methods

Results

Publications

A prospective community engagement initiative to improve clinical research participation in patients with peripheral artery disease.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets