Europa Uomo’s André Deschamps stresses the need to collect accurate data

It is vital that patient feedback on quality of treatment, quality of life and personal preferences is gathered in the right environment – otherwise patient reported outcome measures (PROMS) may not accurately reflect their views and experiences.

This was the message from Europa Uomo’s André Deschamps, speaking at a European Cancer Organisation online roundtable event about realising the potential of PROMS in oncology.

PROMS assess quality of care from the patient perspective, according to what really matters most to them. Europa Uomo has been at the forefront of investigating the treatment outcomes that are most important to men with prostate cancer in Europe through its EUPROMS studies (Europa Uomo Patient Reported Outcome Studies), which have assessed quality of life after different treatments for prostate cancer patients.

André Deschamps, Past Chairman of Europa Uomo, explained how important it had been that the basis of the organisation’s EUPROMS studies had been surveys that patients could complete in their own homes.

“Often patient reported outcomes are recorded in a clinical environment, and if you are sitting with the doctor who is treating you, you are more likely to give the answers they want to hear than say what you really think,” he said. This means the results of clinical studies and patient-conducted studies on the burden of treatment can be very different.

For example, when measuring the impact of radiation therapy on sexual function, the EUPROMS studies found that the quality of life score was 16, whereas clinical studies using the same measures have indicated between 40 and 75.

“How you measure, the questions you ask, the language you use and the environment where you conduct the research –all those things make a big difference and should be considered.”

The roundtable event attracted representatives from oncology, research and patient organisations around Europe. Concluding on the event, co-Chair Zorana Mavaric, Chief Executive Officer of Digestive Cancers Europe, said: “What I am taking with me is that we need to raise awareness among the patients, carers, policy makers and other stakeholders and explain the importance of PROMS. But we also need better alignment between all the projects that are going on in the area of PROMS.”

The European Cancer Organisation will be publishing an action report based on the event proceedings.