When was your child treated for hepatoblastoma (HB)/hepatocellular carcinoma (HCC)?
Was your child’s treatment on a clinical trial?
If you answered yes please continue, if you answered No or Don’t Know, please skip to question 12.
When you were given information about your child’s treatment, did you receive enough information to understand why you were being offered treatment on a clinical trial?
Some clinical trials include a comparison between 2 or 3 trial treatments which are selected at random for any particular child. Was the treatment which your child received as part of the clinical trial randomised?
If Yes, please answer questions 6-11.
If No or Don’t Know, please go to question 12.
Was your child given treatment on one of the following trials?
Was the information sheet you were given about the clinical trial clear for you to understand?
With the treatment randomisation, did you understand the risks and benefits of the treatments which were being compared?
Due to randomisation some patients could have been selected to receive fewer chemotherapy cycles than others or a lower dose of drug, both of these being considered as randomised treatment reductions. Was the randomised treatment your child received have a treatment reduction?
Due to randomisation some patients could have been selected to have a drug added with the aim of reducing side effects called a chemoprotectant. This could risk reducing the efficacy of the chemotherapy and therefore the initial response to treatment. If this happened the chemoprotectant would be stopped and additional treatment added to keep the child safe. Did the randomisation your child was included in involve a chemoprotectant drug to help protect your child’s hearing?
Within the randomisation, was there the option of 3 possible/potential treatments?
How did you find the information you received about surgery?
How did you find the information you received on the chemotherapy drugs?
Late effects of treatment are those which occur or persist after treatment has ended. Before consenting to treatment, were you given information about potential late effects from the treatment your child was going to receive?
If you could change treatment to reduce late effects and you knew that if the treatment was not working well you could add in more treatment to improve the outcome, what percentage risk of needing to add back in additional treatment, to keep your child safe, would you be prepared to accept to give your child the opportunity of gaining this improved quality of life?