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The views of older people and carers on participation in clinical trials : the PREDICT Study

The views of older people and carers on participation ...

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dc.contributor.author Bartlam, Bernadette pl
dc.contributor.author Crome, Peter pl
dc.contributor.author Lally, Frank pl
dc.contributor.author Beswick, Andrew D. pl
dc.contributor.author Cherubini, Antonio pl
dc.contributor.author Clarfield, A. Mark pl
dc.contributor.author Edbrooke, David pl
dc.contributor.author Farré, Albert pl
dc.contributor.author Hertogh, Cees pl
dc.contributor.author Lesauskaite, Vita pl
dc.contributor.author Mills, Gary pl
dc.contributor.author Muller, Martin pl
dc.contributor.author Oristrell, Jaquim pl
dc.contributor.author Prada, Gabriel I. pl
dc.contributor.author Ruggiero, Carmelinda pl
dc.contributor.author Sinclair-Cohen, Judith pl
dc.contributor.author Szczerbińska, Katarzyna [SAP20001704] pl
dc.contributor.author Topinkova, Eva pl
dc.contributor.author Zalewski, Zbigniew [SAP20000839] pl
dc.date.accessioned 2014-12-30T06:15:07Z
dc.date.available 2014-12-30T06:15:07Z
dc.date.created 2012 pl
dc.date.issued 2012 pl
dc.identifier.issn 2041-6792 pl
dc.identifier.uri http://ruj.uj.edu.pl/xmlui/handle/item/2423
dc.language eng pl
dc.title The views of older people and carers on participation in clinical trials : the PREDICT Study pl
dc.type JournalArticle pl
dc.description.physical 327-336 pl
dc.abstract.en Concern over the inappropriate exclusion of older people from clinical trials is longstanding. The PREDICT study used mixed methods to investigate the extent of this exclusion and to explore the views of those directly involved. This paper reports findings from that aspect of the study investigating the views of older people and carers. Drawing on findings from earlier stages in the study, a structured interview schedule was developed to form the basis of focus group discussions. Groups were held across nine countries: the Czech Republic, Israel, Italy, Lithuania, Holland, Poland, Romania, Spain and the UK (n = 42). Discussants were those living with conditions commonly affecting older people: hypertension, cancer, dementia, heart failure, stroke and depression (n = 285). Data were analyzed for differences and commonalities within and between groups. Issues raised fell into four themes: ageism, both within society and amongst clinicians and researchers; advantages and disadvantages to participation; the relationship between the participant and their clinician/research team; and practical features to support participation. Findings confirm that older people and carers see chronological age as an insufficient reason for exclusion from trials and view such exclusion as age discrimination. They point to the complex relationship between healthcare professionals and trial participants and identify the need for cultural and generational sensitivity in trial design, as well as the importance of considering adaptations to meet special needs. Finally, they identify the need for quality of life to be included as an outcome measure in such research and emphasize the importance of including lay perspectives in health research design generally. pl
dc.description.volume 2 pl
dc.description.number 3 pl
dc.identifier.doi 10.4155/cli.12.4 pl
dc.identifier.eissn 2041-6806 pl
dc.title.journal Clinical Investigation pl
dc.language.container eng pl
dc.affiliation Wydział Nauk o Zdrowiu : Instytut Pielęgniarstwa i Położnictwa pl
dc.affiliation Wydział Lekarski : Zakład Socjologii Medycyny pl
dc.subtype Article pl


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