Dataset Information

Attitude of Asian Parkinson Patients towards Clinical Research and Tissue Donation.

ABSTRACT: Objective:The success of clinical research and tissue donation programs are highly dependent on recruitment of willing volunteers. A comprehensive survey of patient preferences and attitudes can help identify and address barriers hindering the recruitment for research. Method:This is a cross-sectional study on 105 Parkinson's disease patients who completed an interviewer-administered questionnaire. Results:Out of 105 respondents, 48% of patients had either already participated in clinical research or were keen to participate. About 80% believed clinical research to be safe for their health and privacy. More than 70% of participants were willing to donate blood, urine, or stool, while 16% were agreeable for cerebrospinal fluid sample donation. Motivating factors for clinical research included altruism (64%) and contribution to advance medical knowledge (64%). Common reasons for unwillingness towards clinical research included the risks involved (43%), time constraints (33%), and mobility challenges (24%). Conclusion:The attitude of Singaporean Parkinson patients toward clinical research and tissue donation is encouraging with about half of the participants willing to support clinical research. Three-quarters of patients would support tissue donations. Participation in research may be further increased with greater patient and public education to overcome misconceptions and also by limiting the demands of studies.

SUBMITTER: Khan S

PROVIDER: S-EPMC7049864 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Attitude of Asian Parkinson Patients towards Clinical Research and Tissue Donation.

Khan Shazma S Foo Joel Y J JYJ Chia Nicole S Y NSY Agustin Sherwin J U SJU Neo Shermyn X M SXM Tay Kay-Yaw KY Au Wing-Lok WL Ng Adeline S L ASL Tan Louis C S LCS

Parkinson's disease 20200219

<h4>Objective</h4>The success of clinical research and tissue donation programs are highly dependent on recruitment of willing volunteers. A comprehensive survey of patient preferences and attitudes can help identify and address barriers hindering the recruitment for research.<h4>Method</h4>This is a cross-sectional study on 105 Parkinson's disease patients who completed an interviewer-administered questionnaire.<h4>Results</h4>Out of 105 respondents, 48% of patients had either already participa ...[more]

PMID: 32148750

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Project description:IntroductionKidney transplantation has become the most cost-effective treatment for patients with end-stage kidney disease (ESKD) and offers them the highest quality of life. Yet, kidney donation is often inaccessible due to cultural and traditional beliefs about organ donation. The goal of our study is to assess the value of kidney donation using the Willingness to Accept (WTA) technique. We also aim to understand the factors influencing an individual's willingness to donate an organ.MethodsA self-administered survey was completed by 985 participants from the general public. The quantitative method and survey design that were chosen used descriptive, correlational, nonparametric, and multivariate statistical tests.ResultsMost of the respondents, 895 (90.9%) are not willing to donate a kidney while alive. Four hundred and five (41.1%) of the respondents are not willing to donate a kidney after their death, while the rest are willing to donate their kidney after their death without financial compensation. The same attitude applies to the donation of a kidney from their relatives. Significant predictors from the results of the logistic regression model in predicting the lowest (minimal) amount that will encourage donation of one kidney after death were: Marital status; Nationality; Adi card holder; Knowing people who need a kidney donation; confidence in the medical staff; and consideration of the family's opinions regarding organ donation.DiscussionUsing cost benefit analysis (CBA), with the aim of evaluating the willingness of individuals to accept payment for innovative medical procedures, such as kidney donation, allows an assessment of the perceived value of the medical procedure and enables policymakers to decide whether to allocate funds or offer subsidies for kidney donation, given the limited healthcare resources available. During our research, we found that most participants did not support the commercialization of organs. Our recommendation for policymakers and health professionals is to continue providing adequate funding for kidney donations and to implement educational programs aimed at improving attitudes towards organ donation.

Project description:BackgroundThe development of new therapies may rely on the conduct of human experimentation as well as later clinical trials of therapeutic interventions. Ethical considerations seek to protect the patient from risk but few have sought to ascertain the attitude to such risk of patients with progressive debilitating or terminal conditions, for which no mitigating or curative therapies exist. Such understanding is also important if recruitment is to be maximized. We therefore sought to define the motivations for and barriers to trial participation amongst patients with progressive ataxias, as well as their condition-specific trial preferences.MethodsWe conducted an online survey consisting of 29 questions covering four key domains (demographics, personal motivation, drug therapy and study design) relating to the design of clinical trials. Two major ataxia charities, Ataxia UK and the Friedreich's Ataxia Research Alliance (FARA) sent the survey to their members. Responses were analysed by disease and by ambulatory status.ResultsOf 342 respondents, 204 reported a diagnosis of Friedreich's ataxia (FRDA), 55 inherited cerebellar ataxia (CA) and 70 idiopathic CA. The most important symptoms to be addressed by a trial were considered to be balance problems and ambulation, although these were superseded by speech problems in wheelchair users. Common motivations for participation were potential benefits to self and others. Reasons for non-participation included concerns about side effects, and the burden and cost of travel. Financial reimbursement for expenses was reported to be likely to increase trial engagement, Phase two trials were the most popular to participate in, and the use of a placebo arm was seen as a disincentive. Across all disease subgroups, drug repurposing trials proved popular and just under 70% of participants would be prepared to undergo intrathecal drug administration.ConclusionsKnowledge of motivations for and barriers to trial participation as well as the acceptability of investigations, time commitments and routes of drug administration should inform better, more patient focused trial design. This in turn may improve recruitment and retention of participants to future trials.

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.

Dataset Information

Attitude of Asian Parkinson Patients towards Clinical Research and Tissue Donation.

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Attitude of Asian Parkinson Patients towards Clinical Research and Tissue Donation.

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