title: Participation in a clinical trial for a child with cancer is burdensome for a minority of children.
abstract: OBJECTIVE
  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.
authors.affiliation: Department of Paediatric Oncology/Haematology, Erasmus MC-Sophia Children's Hospital, Rotterdam, Netherlands.|Princess Maxima Centre for Paediatric Oncology, Utrecht, Netherlands.
authors.forename: Ivana M M
authors.initials: IM
authors.lastname: van der Geest
authors.affiliation: Princess Maxima Centre for Paediatric Oncology, Utrecht, Netherlands.
authors.forename: Marry M
authors.initials: MM
authors.lastname: van den Heuvel-Eibrink
authors.affiliation: Department of Paediatric Oncology/Haematology, Erasmus MC-Sophia Children's Hospital, Rotterdam, Netherlands.
authors.forename: C Michel
authors.initials: CM
authors.lastname: Zwaan
authors.affiliation: Princess Maxima Centre for Paediatric Oncology, Utrecht, Netherlands.
authors.forename: Rob
authors.initials: R
authors.lastname: Pieters
authors.affiliation: Department of Clinical Psychology, VU University Amsterdam, Amsterdam, Netherlands.
authors.forename: Jan
authors.initials: J
authors.lastname: Passchier
authors.affiliation: University of Southampton, Faculty of Health Sciences, Southampton, United Kingdom.
authors.forename: Anne-Sophie E
authors.initials: AS
authors.lastname: Darlington
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D002986:Clinical Trials as Topic / Q000523:psychology*; D005260:Female; D006801:Humans; D007223:Infant; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology*; D010290:Parents / Q000523:psychology; D010342:Patient Acceptance of Health Care; D012189:Retrospective Studies; D011795:Surveys and Questionnaires
keywords: Burden; Cancer; Children; Clinical trial; Palliative care