Prostate cancer patient webinar underlines the importance of measuring the Quality of Life of caregivers

Results from a recent questionnaire on prostate cancer patients’ quality of life (QoL) showed that 85% of them live with a family member, partner or spouse.  Why is there so little information on the QoL of these carers, whose wellbeing is vital to the welfare of the cancer patient? This was an important question raised by participants at this year’s second EORTC patient webinar, on prostate cancer.  The webinar, which took place on Thursday 5 November, was attended by over 70 people, and was chaired by Professor Bertrand Tombal, EORTC President.

André Deschamps, Europa Uomo Chairman, presented the results of a study of patient-reported outcomes: « the first ever study in prostate cancer from patients for patients. »  Patient-reported outcomes reported in clinical studies often did not match patient stories, he said, and hence it was necessary to have a better understanding of exactly what did matter to them. The study received answers from nearly 3000 patients in 24 countries at different stages in their treatment, and found that these treatments could have a major effect on QoL. Sexual dysfunction was the most frequently reported side effect, followed by urinary incontinence. Other questions asked about such side effects as tiredness, pain and discomfort, and depression and anxiety.

« The survey shows clearly that early detection of cancer is vital to a good QoL, » said Mr Deschamps. « QoL deteriorates markedly during the progression of disease. Active surveillance has the fewest side effects of all treatments and therefore, if it can be used safely, it should be the first treatment of choice. This is why we say “getting rid of cancer” becomes “quality of life, living with cancer”.»

Professor Anne-Sophie Darlington, chair of the EORTC QoL Group, gave the second presentation. The group has over 300 scientists and clinicians who focus their work on QOL, she said. Regulators are giving more and more importance to QoL when approving anticancer drugs, and patients’ experience with a particular drug should be regarded as essential information in the approval process.

A lively discussion around the further development of QoL questionnaires ensued. Participants thought that it was important that questions made sense to patients and represented important quality of life issues in order to avoid ‘survey fatigue’. If questionnaires are more targeted, 20 minutes to respond should be enough.

The role of the caregiver was extremely important, yet there were very few data available on their QoL. It was also likely that they would rate the importance of side effects differently – for example, a caregiver might rate sexual dysfunction as less important than urinary incontinence. More and more work is including the QOL of partners and this is an exciting field.

The webinar ended with a commitment from Europa Uomo and EORTC to explore working together on the development of a caregiver QoL survey. « We are excited about this possibility. Given the vital role that partners and others play in all cancers, this is an important step forward, » said Prof Tombal.

If you missed the webinar, you can view the recording here.