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Understanding parents and adolescents' perceptions of a research clinical trial and the informed consent/assent process in the paediatric oncology setting
Abstract

Understanding parents and adolescents' perceptions of a research clinical trial and the informed consent/assent process in the paediatric oncology setting

Y Hastings, L Lockwood, Jeanine Young and N K Bradford
Pediatric Blood & Cancer, Vol.57(5), p.726
Congress of the International Society of Paediatric Oncology (SIOP), 43rd (Auckland, New Zealand, 28-Oct-2011–30-Oct-2011)
2011
DOI: https://doi.org/10.1002/pbc.23299
url
https://doi.org/10.1002/pbc.23299View
Published Version

Abstract

Oncology and Carcinogenesis Paediatrics and Reproductive Medicine
Purpose: Around 80% of children receive cancer treatment through a clinical trial. Understanding informed consent underpins the integrity of good clinical practice in clinical trials however the stress of a life threatening diagnosis challenges the absorption of information. The aims of this study were to establish families understanding of this process and identify what information was important to them. Method: Parents and children, aged 8-16 years, enrolled on a clinical trial, were given questionnaires one month after diagnosis. Parents were asked to complete all questions for children less than 12 years old, while older adolescents completed their own. Consent was received from all participants. Results: Responses were received from 50 parents and 27 adolescents. Diagnosis of participants included leukaemia's (50%), lymphoma (10%) and solid tumours (40%). The majority of parents (94%) agreed that they understood the diagnosis and information regarding the purpose of the clinical trial. Parents relied primarily on their Oncology consultant although also sought information from nursing staff (72%), psychosocial staff (62%), the internet (58%) and printed resources (50%). Parents discussed the diagnosis with their children although only 60% felt that their child understood what the treatment meant. Adolescents also agreed (96%) that they understood the diagnosis, but the clinical trial treatment and consent/assent process was poorly understood with 52% being unsure if this discussion had occurred and only 29% indicating that they understood what this meant. 60% preferred that their parents make decisions but more information was wanted on the impact of the treatment and the subsequent ability to return to their normal life. Conclusion: Parents indicated a good understanding of the informed consent process. Adolescents wanted to be involved in discussions regarding treatment and the clinical trial process, but had a limited understanding and many preferred their parents to make decisions for them.

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