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

2012
journal article
article
cris.lastimport.wos2024-04-09T19:38:42Z
dc.abstract.enConcern 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.affiliationWydział Nauk o Zdrowiu : Instytut Pielęgniarstwa i Położnictwapl
dc.affiliationWydział Lekarski : Zakład Socjologii Medycynypl
dc.contributor.authorBartlam, Bernadettepl
dc.contributor.authorCrome, Peterpl
dc.contributor.authorLally, Frankpl
dc.contributor.authorBeswick, Andrew D.pl
dc.contributor.authorCherubini, Antoniopl
dc.contributor.authorClarfield, A. Markpl
dc.contributor.authorEdbrooke, Davidpl
dc.contributor.authorFarré, Albertpl
dc.contributor.authorHertogh, Ceespl
dc.contributor.authorLesauskaite, Vitapl
dc.contributor.authorMills, Garypl
dc.contributor.authorMuller, Martinpl
dc.contributor.authorOristrell, Jaquimpl
dc.contributor.authorPrada, Gabriel I.pl
dc.contributor.authorRuggiero, Carmelindapl
dc.contributor.authorSinclair-Cohen, Judithpl
dc.contributor.authorSzczerbińska, Katarzyna - 133573 pl
dc.contributor.authorTopinkova, Evapl
dc.contributor.authorZalewski, Zbigniew - 133886 pl
dc.date.accessioned2014-12-30T06:15:07Z
dc.date.available2014-12-30T06:15:07Z
dc.date.issued2012pl
dc.date.openaccess0
dc.description.accesstimew momencie opublikowania
dc.description.number3pl
dc.description.physical327-336pl
dc.description.versionostateczna wersja wydawcy
dc.description.volume2pl
dc.identifier.doi10.4155/cli.12.4pl
dc.identifier.eissn2041-6806pl
dc.identifier.issn2041-6792pl
dc.identifier.projectROD UJ / Ppl
dc.identifier.urihttp://ruj.uj.edu.pl/xmlui/handle/item/2423
dc.languageengpl
dc.language.containerengpl
dc.rightsUdzielam licencji. Uznanie autorstwa*
dc.rights.licenceCC-BY
dc.rights.urihttp://creativecommons.org/licenses*
dc.share.typeotwarte czasopismo
dc.subtypeArticlepl
dc.titleThe views of older people and carers on participation in clinical trials : the PREDICT Studypl
dc.title.journalClinical Investigationpl
dc.typeJournalArticlepl
dspace.entity.typePublication
cris.lastimport.wos
2024-04-09T19:38:42Z
dc.abstract.enpl
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.
dc.affiliationpl
Wydział Nauk o Zdrowiu : Instytut Pielęgniarstwa i Położnictwa
dc.affiliationpl
Wydział Lekarski : Zakład Socjologii Medycyny
dc.contributor.authorpl
Bartlam, Bernadette
dc.contributor.authorpl
Crome, Peter
dc.contributor.authorpl
Lally, Frank
dc.contributor.authorpl
Beswick, Andrew D.
dc.contributor.authorpl
Cherubini, Antonio
dc.contributor.authorpl
Clarfield, A. Mark
dc.contributor.authorpl
Edbrooke, David
dc.contributor.authorpl
Farré, Albert
dc.contributor.authorpl
Hertogh, Cees
dc.contributor.authorpl
Lesauskaite, Vita
dc.contributor.authorpl
Mills, Gary
dc.contributor.authorpl
Muller, Martin
dc.contributor.authorpl
Oristrell, Jaquim
dc.contributor.authorpl
Prada, Gabriel I.
dc.contributor.authorpl
Ruggiero, Carmelinda
dc.contributor.authorpl
Sinclair-Cohen, Judith
dc.contributor.authorpl
Szczerbińska, Katarzyna - 133573
dc.contributor.authorpl
Topinkova, Eva
dc.contributor.authorpl
Zalewski, Zbigniew - 133886
dc.date.accessioned
2014-12-30T06:15:07Z
dc.date.available
2014-12-30T06:15:07Z
dc.date.issuedpl
2012
dc.date.openaccess
0
dc.description.accesstime
w momencie opublikowania
dc.description.numberpl
3
dc.description.physicalpl
327-336
dc.description.version
ostateczna wersja wydawcy
dc.description.volumepl
2
dc.identifier.doipl
10.4155/cli.12.4
dc.identifier.eissnpl
2041-6806
dc.identifier.issnpl
2041-6792
dc.identifier.projectpl
ROD UJ / P
dc.identifier.uri
http://ruj.uj.edu.pl/xmlui/handle/item/2423
dc.languagepl
eng
dc.language.containerpl
eng
dc.rights*
Udzielam licencji. Uznanie autorstwa
dc.rights.licence
CC-BY
dc.rights.uri*
http://creativecommons.org/licenses
dc.share.type
otwarte czasopismo
dc.subtypepl
Article
dc.titlepl
The views of older people and carers on participation in clinical trials : the PREDICT Study
dc.title.journalpl
Clinical Investigation
dc.typepl
JournalArticle
dspace.entity.type
Publication

* The migration of download and view statistics prior to the date of April 8, 2024 is in progress.

Views
47
Views per month
Views per city
Chandler
5
Ashburn
4
Bradford
4
Limerick
3
Brisbane
2
Castelbellino
2
Durham
2
Krakow
2
Wroclaw
2
Boardman
1
Downloads
szczerbinska_zalewski_et-al_the_views_of_older_people_and_carers_on_participation_2012.pdf
36