Enrolment in paediatric oncology early-phase clinical trials : the health-care professionals' perspective

Eden G. Robertson, Richard Mitchell, Claire E. Wakefield, Peter Lewis, Nicole Cousens, Glenn M. Marshall, Susan J. Russell, David S. Ziegler, Antoinette C. Anazodo, Toby N. Trahair, Draga Barbaric, Richard J. Cohn, Frank Alvaro, Tracey A. O’Brien

Research output: Contribution to journalArticlepeer-review

15 Citations (Scopus)

Abstract

Aim: Approximately 20–30% of children/adolescents with cancer will not respond to standard therapies. These children are usually offered experimental treatment in the form of an early‐phase clinical trial. We examined the perspectives of health‐care professionals (HCPs) regarding obtaining informed consent for early‐phase trials in paediatric oncology. Methods: We collected survey data from 87 HCPs working in paediatric cancer centres across Australia and New Zealand. Results: HCPs were, on average, 44 years old (range = 25–74), with 15.8 years' experience in paediatric oncology (range = 1–40). Few HCPs (17.4%) received training for early‐phase trial consent; however, most were willing to attend training (77.9%). HCPs (61.6%) reported that they informed families about early‐phase trials without any attempt to influence their decision. However, 23.3% of HCPs reported that they informed families that their child would benefit. HCPs' main obstacle in obtaining consent was their perception of parents' eagerness to ‘try anything’ (52.3%). HCPs perceived that many parents misunderstood key clinical trials concepts, with 25.2% of HCPs believing that not being given clear information influenced parents' decisions. Physicians were more likely than social workers/nurses to inform families that other children will benefit from enrolment in the study. Social workers/nurses appeared to rate the chance of benefits for the patient higher than physicians. Conclusions: HCPs may experience difficulty conducting early‐phase trial consultations and obtaining valid informed consent. Our study highlights the need for formal training for HCPs and additional patient education tools.
Original languageEnglish
Pages (from-to)561-566
Number of pages6
JournalJournal of Paediatrics and Child Health
Volume55
Issue number5
DOIs
Publication statusPublished - 2019

Keywords

  • clinical trials
  • decision making
  • informed consent (medical law)
  • medical personnel
  • oncology
  • pediatrics

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