Eden Robertson, PhD candidate at the Behavioural Sciences Unit, along with national and international collaborators, has recently published a systematic review in Patient Education and Counseling that aims to answer this question.
Clinical trials are designed to test the safety and efficacy of new diagnostic tests or treatments. While they are necessary to improve outcomes childhood cancer, many families find deciding whether to enrol in a clinical trial difficult.
Shared decision-making is perhaps the most ethical approach for clinical trial enrolment decisions considering that usually there is no single ‘correct’ decision. In childhood cancer, shared decision-making is typically between parents and healthcare professionals. In some cases it can also extend to include the patient.
As no interventions have yet been formally evaluated to determine how best to facilitate shared decision-making in paediatric oncology clinical trials, we undertook a systematic review to identify any recommendations published in the literature.
We reviewed 924 articles to reveal 17 studies that recommended at least one strategy to facilitate shared decision-making in paediatric oncology clinical trials.
Our results highlight that:
- decision-making about clinical trials is a process, not just a single decision;
- each family (and family-member) has personal preferences for how much they want to be involved in decisions and how much information they receive, and that this can change over time;
- information needs to be clear and jargon-free;
- healthcare professionals should encourage parents and young patients to ask questions; and
- families need more support to help them make decisions that best align with their values.
This review has led to the development of ‘Delta’, a decision aid for families who are considering enrolling in a clinical trial. You can read more about the Delta study here. You can also access the published systematic review here.
The Behavioural Sciences Unit is Proudly Supported by the Kids with Cancer Foundation.