Details

Autor(en) / Beteiligte

• van der Geest, Ivana M.M.
• van den Heuvel-Eibrink, Marry M.
• Zwaan, C. Michel
• Pieters, Rob
• Passchier, Jan
• Darlington, Anne-Sophie E.

Titel

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

Ist Teil von

• Acta Paediatrica, 2016-09, Vol.105 (9), p.1100-1104

Ort / Verlag

Norway: Blackwell Publishing Ltd

Erscheinungsjahr

2016

Quelle

Wiley Online Library Journals Frontfile Complete

Beschreibungen/Notizen

• 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. Conclusion 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.