What we decided to look at is in this application patients are describing their problems with the drugs, the side effects and many other collateral things that usually they don’t tell the doctors much about. Doctors write about the situation of the patient, how is he doing, how is he not doing, benefiting from the treatment, all those things, but patients sometimes forget to tell some of these effects. Usually there are more to deal with the emotional side as well as the financial side and the use of other complementary or alternative medications.
So we looked into that matter, we sent a survey to 256 patients, members of the application, and they replied to the questions that we posted to them. What we found was very interesting because we found that a high number of patients have been having problems like depression and anxiety and probably a third of the patients reported that at any stage during the course of their disease and treatment they experienced that. Most interesting is that when we look into financial toxicity, and that happened in half of the patients, mainly in the group 35-50 years of age, and there were two main issues. One was loss of work because they were absent from work and they were told that there is no more work for them because of their circumstance and also because of the high co-payments that they have to do in certain countries. We need to understand that this application is a worldwide application so most of the patients come from North America but there are patients from the UK, there are patients from Australia and patients from other English-speaking countries. So that can vary from that point of view. We didn’t select them, the patients selected themselves to be part of the survey.
From the point of view of complementary medications, we saw an increase in what the patients are taking at the moment, not just what we call the common things like multivitamins and other complementary drugs, but also the use of cannabis oil or cannabis in any other form.
One of the things that probably is of interest to you and to the audience is the fact that those patients that had a recurrence or they had metastatic disease, they were the patients that had, or they said that they had, more financial problems and they recur to do complementary medications. Why is that? It’s because they couldn’t afford, maybe, the medications that they were supposed to take and they used other things from that point of view.
We are expanding now this work and we are doing another clinical trial, another survey, clinical survey, only in advanced breast cancer. Because we see that that’s where the group is that is mostly having problems. This can be used to any cancer types, the reason why we choose to do it in metastatic breast or in breast is because it’s the largest group that we see, it’s the most proactive group. They want to know more about it, they are very much into the relation with doctors and the internet and with other patients trying to get much more information available.
We measured general side effects but we didn’t look too much into the nausea and the vomiting and the hair loss because those are the most common things, but mostly on what is causing the patient to actually delay treatment, stop treatment, change treatment. So fatigue, depression, anxiety and financial toxicity, those are the main causes for that.
So how should this impact patient management or practice?
It impacts because unfortunately many of the things can impact on the outcomes of the patient. Very difficult to measure the outcome at this present time but we are now understanding how to do this process better and we will start measuring patients’ outcomes in the next surveys. Doctors should inform the patients that there are applications such as this one where patients can also participate freely at no cost and anonymously so they can pose the questions without feeling embarrassed about them or feeling that there will be a problem, an ethical problem with the treating doctor. We will never recommend a treatment, we will always send the patient to the treating doctor to take care of them.