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Participation in a clinical trial for a child with cancer is burdensome for a minority of children

Participation in a clinical trial for a child with cancer is burdensome for a minority of children
Participation in a clinical trial for a child with cancer is burdensome for a minority of children
AIM:This study explored how parents who had lost a child to cancer felt about them taking part in a clinical trial.

METHODS: A retrospective questionnaire was sent to parents who had lost a child to cancer. They were asked whether their child took part in a clinical trial during their palliative phase, their motives for their child's participation, how they perceived their child's burden and whether they would, hypothetically speaking, enrol again.

RESULTS: The 24 parents of 16 deceased children who had participated in a clinical trial explained their motives for their child's participation. The most common answers, with multiple responses, were treatment for future patients (n=16), hope for a cure (n=9) and prolonging their child's life (n=6). Eight parents said that participating was not burdensome for their child and four said it was very burdensome, with others answering in between. None of the parents would decline participation if they would be in the same situation again.

CONCLUSIONS: Performing clinical trials, even in a vulnerable population, such as children with cancer at the end of life, may not always lead to increased burden. None of the parents would in future, given the same circumstances, decline participation in a clinical trial.
0803-5253
1100-1104
van der Geest, Ivana M.M.
b3e44c5a-03a8-40cf-8485-fb3307c2a302
van den Heuvel-Eibrink, Marry M.
093a9aa2-cb40-4839-b6e5-50cfbfb9df15
Zwaan, C.Michel
800dd9c8-a1b7-44c4-9282-08acc04d521c
Pieters, Rob
958e8db6-8c78-4019-ac64-d9b46a80670f
Passchier, Jan
d380f180-41f2-4fcf-a481-5c5dfc8fe643
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
van der Geest, Ivana M.M.
b3e44c5a-03a8-40cf-8485-fb3307c2a302
van den Heuvel-Eibrink, Marry M.
093a9aa2-cb40-4839-b6e5-50cfbfb9df15
Zwaan, C.Michel
800dd9c8-a1b7-44c4-9282-08acc04d521c
Pieters, Rob
958e8db6-8c78-4019-ac64-d9b46a80670f
Passchier, Jan
d380f180-41f2-4fcf-a481-5c5dfc8fe643
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962

van der Geest, Ivana M.M., van den Heuvel-Eibrink, Marry M., Zwaan, C.Michel, Pieters, Rob, Passchier, Jan and Darlington, Anne-Sophie (2016) Participation in a clinical trial for a child with cancer is burdensome for a minority of children. Acta Paediatrica, 105 (9), 1100-1104. (doi:10.1111/apa.13405). (PMID:26991953)

Record type: Article

Abstract

AIM:This study explored how parents who had lost a child to cancer felt about them taking part in a clinical trial.

METHODS: A retrospective questionnaire was sent to parents who had lost a child to cancer. They were asked whether their child took part in a clinical trial during their palliative phase, their motives for their child's participation, how they perceived their child's burden and whether they would, hypothetically speaking, enrol again.

RESULTS: The 24 parents of 16 deceased children who had participated in a clinical trial explained their motives for their child's participation. The most common answers, with multiple responses, were treatment for future patients (n=16), hope for a cure (n=9) and prolonging their child's life (n=6). Eight parents said that participating was not burdensome for their child and four said it was very burdensome, with others answering in between. None of the parents would decline participation if they would be in the same situation again.

CONCLUSIONS: Performing clinical trials, even in a vulnerable population, such as children with cancer at the end of life, may not always lead to increased burden. None of the parents would in future, given the same circumstances, decline participation in a clinical trial.

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More information

Accepted/In Press date: 11 March 2016
e-pub ahead of print date: 16 March 2016
Published date: 2016
Organisations: Faculty of Health Sciences

Identifiers

Local EPrints ID: 393039
URI: http://eprints.soton.ac.uk/id/eprint/393039
ISSN: 0803-5253
PURE UUID: 8b5ce350-b0a5-405d-8905-df41db7894cc

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Date deposited: 20 Apr 2016 13:06
Last modified: 15 Mar 2024 05:30

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Contributors

Author: Ivana M.M. van der Geest
Author: Marry M. van den Heuvel-Eibrink
Author: C.Michel Zwaan
Author: Rob Pieters
Author: Jan Passchier

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