Real-world behavioural restrictional practices of cancer patients

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Published: 8 Jun 2023
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Dr Daniel Vorobiof - Belong.Life, New York, USA

Dr Daniel Vorobiof speaks to ecancer at ASCO 2023 about a study presented on the real-world behavioural restrictional practices of cancer patients.

He explains that information was gathered on Belong.Life (a social media platform for oncology patients) where 1300 patients responded to the survey.

Dr Vorobiof reports that the answers indicated many misconceptions in what can affect the quality of life of a patient following treatment.

Hi, I’m Dr Daniel Vorobiof, I’m the Chief Medical Officer of Belong.Life. The study that we did and was presented as a poster in ASCO this year has to deal with the perceptions that patients that are undergoing chemotherapy have about their own restrictions that can affect their quality of life. We know that there are strict restrictions that the patients should consider, but we also know that there are lots of misinterpretations and myths around the time that a patient is undergoing chemotherapy. 

So a pilot study was done in approximately 300 and some patients, and we decided to open it through Belong.Life, which is a social media platform for oncology patients. We gathered information asking these patients that are undergoing chemotherapy or radiotherapy, and more than 1,300 patients responded to the survey. What we saw is that there are many misconceptions and many things that can affect the quality of life of the patient while undergoing treatment. We believe that these points need to be incorporated in the daily practice when we talk to the patients, and we express our opinions, and not what they hear from friends or from unsubstantiated sources. When they hear it from the medical staff - what they can do, what they cannot do, and how to continue their normal lives while they are on treatment, on active treatment. We believe that for clinical trials that is also a very important point that needs to be incorporated into the pragmatic lines of a clinical trial at the moment. These points, which are real world evidence that patients are doing, need to be considered also to widen the knowledge and understanding of what the patients are going through.

What were the objectives of this study?

The main objective was to confirm, to validate the initial pilot study that was done in a smaller number of patients, and that was confirmed, and we see that patients avoid going to the beach, avoid travelling, avoid even dyeing their hair because they think they are forbidden to do certain things. They are not correct, it’s not right for everybody, it’s right for some patients but not for every patient.

How can this information be used in a clinical setting?

Knowledge is power, and therefore patients need to be educated. Patients need to be informed, not to listen to what someone else mentioned but to confirm with the doctors, with the medical staff, what is allowed to them, or what is not allowed to them. There are different types of treatments; patients undergo simple treatments, let’s call it this way, and they can undergo also very aggressive types of treatments, so there are things that need to be adjusted, personalised to those specific situations. 

With this survey that we did and we presented of more than 1,300 patients, it is possible that a communication channel is opened with the patients from the medical staff in order to help them doing certain things, improve their quality of life, and not feel miserable all the time because they are restricted in what they can do.