Patients with advanced cancer and few treatment options are interested in tumour molecular profiling but less willing to pay for it, according to new Australian research.

In a sub-study of the Molecular Screening and Therapeutics (MoST) Program, 777 patients were presented with scenarios around the likelihood of molecular profiling returning an actionable variant and the amount they were willing to pay for those tests.

Most patients (89%) indicated they would have molecular profiling even with only a 1% likelihood of finding a clinically actionable variant that could guide further treatment.

An additional 7% would require at least a 20% actionable return rate in order to have molecular profiling.

A further 1% of the patients would require more certainty – at least a 40% actionable return rate – in order to have the testing while 2% of patients consistently chose not to have the hypothetical testing.

However the cost of the testing appeared to dim patients’ interest in molecular profiling.

While most patients (73%) indicated they would pay at least $1,000 for testing, only 57% were willing to do so for a 1% actionable return rate.

If the cost of the hypothetical testing was raised to $3,000, 55% indicated they were still willing to pay but only 38% were willing to do so for a 1% actionable return rate.

At $10,000, only 33% of patients were willing to pay and only 22% were willing to do so for a 1% return rate.

Lead investigator Professor Phyllis Butow told the limbic that hope played a very big role in the study.

“Not only were they patients with advanced cancer but they were patients with advanced cancer who had failed previous treatment so they were in a bit of a desperate situation and there is no doubt at all that many of them, not all, but many of them were really looking for any chance they could possibly have of hope.”

“In fact, when the study began there was very little chance of finding an actionable result where there was any hope of a potential treatment.”

She added that even if there was an actionable result and data suggesting a particular therapy could help, patients weren’t guaranteed access to those treatments.

“Most of those treatments were still experimental so people would be going into a clinical trial if they found an actionable result so it was still very uncertain that it would help them in the long run.”

Professor Butow, from the University of Sydney’s Psycho-Oncology Co-Operative Research Group, said the cost of molecular profiling had come down significantly and presumably would continue to do so.

“The real costs were around $1,000 and interestingly a quarter of our patients were not prepared to pay even $1,000 for the test. Most people wanted it but they weren’t necessarily prepared to pay for it. ”

“It raises important issues about access if a quarter of patients feel potentially that this was a financial cost that they couldn’t take then it means that unless governments pay for these sorts of tests, then it will be privileging people with a higher income.”

“As a society we really need to keep thinking about how much value we place on these sorts of tests and how much money as a society we are prepared to pay.”

She said cost was an indirect way of assessing how people value something.

“There was a third who were willing to pay $10,000 and a fifth of them were willing to pay $10,000 even for a 1% actionable return rate – a one in a hundred chance that this is going to end up being useful to them.

“…it does suggest that if you’ve got the money, any hope is very valuable.”

Professor Butow said the findings suggested it was important to be very careful with the consenting process – not to oversell hope in a vulnerable population of people with advanced cancer.