ArticleThe British journal of general practice : the journal of the Royal College of General Practitioners2003
Participating in the United Kingdom Prospective Diabetes Study (UKPDS): a qualitative study of patients' experiences.
Article in The British journal of general practice : the journal of the Royal College of General Practitioners, 2003. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 1 of them a synthesis that pooled it.
What it found
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
24 citing papers in PubMed, 1 synthesis or guideline pooled it, 49 citations in OpenAlex.
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- Presenting the results of clinical trials to participants.Clinical medicine (London, England) · 2009Trial
- Exploring the Motivational Drivers of Young Adults with Diabetes for Participation in Kidney Research.Journal of patient experience · 2022Article
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- Experiences of Patients After Withdrawal From Cancer Clinical Trials.JAMA network open · 2021Article
- Nutrition and physical activity intervention for families with familial hypercholesterolaemia: protocol for a pilot randomised controlled feasibility study.Pilot and feasibility studies · 2020Article
- Rationale and study protocol for Unidas por la Vida (United for Life): A dyadic weight-loss intervention for high-risk Latina mothers and their adult daughters.Contemporary clinical trials · 2018Article
- Identification of outliers and positive deviants for healthcare improvement: looking for high performers in hypoglycemia safety in patients with diabetes.BMC health services research · 2017Article
- Maternal participant experience in a South African birth cohort study enrolling healthy pregnant women and their infants.Philosophy, ethics, and humanities in medicine : PEHM · 2016Article
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- Patient experiences in retinal trials: a cross-sectional study.BMC ophthalmology · 2015Article
- Reasons for and reservations about research participation in acutely injured adults.Journal of nursing scholarship : an official publication of Sigma Theta Tau International Honor Society of Nursing · 2015Article
- Motivations of Patients with Diabetes to Participate in Research.AJOB empirical bioethics · 2014Article
- Accessing health services through the back door: a qualitative interview study investigating reasons why people participate in health research in Canada.BMC medical ethics · 2013Article
- Recruitment for a clinical trial of chronic disease self-management for older adults with multimorbidity: a successful approach within general practice.BMC family practice · 2013Article
- Disseminating results to clinical trial participants: a qualitative review of patient understanding in a post-trial population.BMJ open · 2012Article
- Reasons for participating in randomised controlled trials: conditional altruism and considerations for self.Trials · 2010Article
- Qualitative research and content validity: developing best practices based on science and experience.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2009Article
Corrections and comments
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Authors and funding
4 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The United Kingdom Prospective Diabetes Study (UKPDS) is one of the longest and largest clinical trials ever conducted. It explored the effects of intensive blood glucose and blood pressure control on the development of complications in patients with type 2 diabetes. Patients took part in this trial for up to 20 years and the drop-out rate was extremely low. The aim of this discussion paper is to explore patients' motivations for joining the UKPDS and for remaining in the trial, and to examine the implications of findings for good practice before, during, and after clinical trials. A qualitative, exploratory study was undertaken, involving former UKPDS patients (n = 10) at Northampton General Hospital, England. In-depth, semi-structured interviews were undertaken and the data analysed using grounded theory approaches. The results showed that patients were motivated to join the UKPDS because they believed this would give them the best clinical care and reduce the threat of the disease. However, all of the patients identified unanticipated benefits of trial participation, to which they attributed their strong commitment to the UKPDS. These included the reassurance provided by regular clinical examinations, the personal nature of clinical care, and the welcome discipline imposed by UKPDS professionals. Transition back to primary care at trial closure could be a lonely experience, despite follow-up being seen as competent. Practitioners involved in recruiting patients for clinical trials should be aware that participants may be motivated by the desire for better clinical care, irrespective of randomisation consequences. Those taking back the clinical care of trial participants with chronic disease may wish to consider a 're-entry' interview, to minimise trial bereavement.
Indexed as
Identifiers
12830569PMC1314601W155592958What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.