A pioneering project is to study how myeloma patients feel about receiving information about their genetic risk and their disease’s response to treatment, and understand what support they want.
The project, at University College London, is funded by the charity Myeloma UK and the first to receive one of its new Survivorship Grants.
The RADAR Attitude Study – RADIUS – is part of the RADAR clinical trial, which is using genetic analysis to improve treatment for patients with myeloma. RADIUS is led by Professor Abi Fisher, professor of behavioural science and health, and Dr Orla McCourt, a clinical academic physiotherapist who has specialised in haematology care.
Professor Fisher said the idea came from a patient representative who was concerned that patients might not understand the information they receive at different stages of treatment.
In a news article published by Myeloma UK, Professor Fisher said: “You might get a genetic test and suddenly be told you’re high-risk and you might not know what it means. That could really be distressing and obviously have a big impact on your quality of life. It could also impact the trial because you might drop out. These trials are complicated, they have to be, so it’s about how we can support patients and improve communication.”
Dr McCourt said: “Patients for many years have told us it’s important that we work on finding out what affects their quality of life but also the things we can do to improve quality of life when living with myeloma. Partnering with a charity like Myeloma UK, that advocates for and funds that sort of work is really important.”
Myeloma UK said of Prof Fisher and Dr McCourt: “Their ground-breaking work will dig deeper into the impact of receiving complex and distressing information during clinical trials on people’s quality of life.”
Source: Myeloma UK
Link: https://www.myeloma.org.uk/news/myeloma-uk-survivorship-grant-announced/
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