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Patient acceptability of, and attitudes towards, hepatitis B cure research - A scoping review and identification of knowledge gaps.

ABSTRACT: Functional cure, defined as durable loss of hepatitis B surface antigen (HBsAg) and hepatitis B virus (HBV) DNA suppression off therapy, is an increasingly important goal in the treatment of chronic hepatitis B. Although novel treatments aimed at achieving functional cure are being developed and tested in clinical trials, it is important to assess the perspectives of people living with HBV towards these potential treatments and their participation in HBV functional cure research. We have performed a scoping review that revealed that there is limited knowledge regarding patient perspectives of HBV functional cure research and then identified gaps in knowledge for further investigation. Our work highlights the need for further studies in patient perspectives in HBV functional cure research.

SUBMITTER: Mohtashemi N

PROVIDER: S-EPMC10755539 | biostudies-literature | 2023 Dec

REPOSITORIES: biostudies-literature

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Patient acceptability of, and attitudes towards, hepatitis B cure research - A scoping review and identification of knowledge gaps.

Mohtashemi Neaka N Dubé Karine K Thio Chloe C Song Sihyeong S Patel Shail S Sugarman Jeremy J Bhattacharya Debika D

Journal of virus eradication 20231124 4

Functional cure, defined as durable loss of hepatitis B surface antigen (HBsAg) and hepatitis B virus (HBV) DNA suppression off therapy, is an increasingly important goal in the treatment of chronic hepatitis B. Although novel treatments aimed at achieving functional cure are being developed and tested in clinical trials, it is important to assess the perspectives of people living with HBV towards these potential treatments and their participation in HBV functional cure research. We have perform ...[more]

PMID: 38161322

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Project description:BackgroundThe SARS-CoV-2 pandemic has highlighted once more the great need for comprehensive access to, and uncomplicated use of, pre-existing patient data for medical research. Enabling secondary research-use of patient-data is a prerequisite for the efficient and sustainable promotion of translation and personalisation in medicine, and for the advancement of public-health. However, balancing the legitimate interests of scientists in broad and unrestricted data-access and the demand for individual autonomy, privacy and social justice is a great challenge for patient-based medical research.MethodsWe therefore conducted two questionnaire-based surveys among North-German outpatients (n = 650) to determine their attitude towards data-donation for medical research, implemented as an opt-out-process.ResultsWe observed a high level of acceptance (75.0%), the most powerful predictor of a positive attitude towards data-donation was the conviction that every citizen has a duty to contribute to the improvement of medical research (> 80% of participants approving data-donation). Interestingly, patients distinguished sharply between research inside and outside the EU, despite a general awareness that universities and public research institutions cooperate with commercial companies, willingness to allow use of donated data by the latter was very low (7.1% to 29.1%, depending upon location of company). The most popular measures among interviewees to counteract reservations against commercial data-use were regulation by law (61.4%), stipulating in the process that data are not sold or resold (84.6%). A majority requested control of both the use (46.8%) and the protection (41.5%) of the data by independent bodies.ConclusionsIn conclusion, data-donation for medical research, implemented as a combination of legal entitlement and easy-to-exercise-right to opt-out, was found to be widely supported by German patients and therefore warrants further consideration for a transposition into national law.

Project description:BackgroundThe involvement of the undergraduates in the research field requires a better view of their potential and the anticipated barriers facing them. This study aims to assess the undergraduates' knowledge, attitudes, practices and perceived barriers towards research in six Arab countries.MethodsA cross sectional study included medical students from six Arab countries, where a self-administered five-section questionnaire was used to assess the students' demographics, knowledge, attitudes, practices and perceived barriers. The questionnaire was distributed in the online educational platforms of the participating medical schools in the six included countries.ResultsThe total sample of recruited students was 2989, the majority of students (91.6%) showed poor level of knowledge regarding research. Generally high levels of positive attitudes towards research, research relevance and usefulness were found, with moderate levels of perception of research anxiety and difficulty. 33.7% (n = 1006) participated in an actual research project before with a mean of .5 publications per student. Cross-sectional studies were the most common type of studies conducted by students (38.6%), followed by case reports (23.9%). Lack of access to lab equipment for lab research (68.1%), the priority of education over research (66.8%), and lack of time because of educational tasks (66.1%) were generally the top perceived barriers towards research practice.ConclusionIn the current study, the participants showed a poor knowledge level with associated positive attitudes towards research. One third of the students participated in research projects that mostly were cross-sectional studies and case reports. Educational tasks and lack of support were the most prevalent barriers. The students' positive attitudes towards research need to be translated into better knowledge and appropriate practice, which can be done by development of better training systems and more structured mentoring.

Dataset Information

Patient acceptability of, and attitudes towards, hepatitis B cure research - A scoping review and identification of knowledge gaps.

Publications

Patient acceptability of, and attitudes towards, hepatitis B cure research - A scoping review and identification of knowledge gaps.

Similar Datasets

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