according to a presentation at the virtual annual congress of the European Association of Urology (EAU).
Results of EUPROMS – the first patient-driven, international, prostate cancer quality of life study – showed that fatigue, insomnia, urinary incontinence, and sexual function were worse with certain types of treatments.
“Quality of life is negatively impacted by any treatment for prostate cancer other than active surveillance,” said André Deschamps, the chairman of the patient advocacy movement Europa Uomo, which conducted the study with support from Erasmus University Medical Center in Rotterdam, the Netherlands.
Active surveillance “should be promoted as the first option for treatment for those men where it can be offered safely,” Mr. Deschamps said when presenting the study at the EAU congress.
The study showed that quality of life related to urinary incontinence was lowest in patients who had undergone radical prostatectomy, and sexual function was greatly affected by radiotherapy. Radiotherapy and chemotherapy had the greatest impact on patients’ levels of fatigue, and chemotherapy was associated with “the worst possible outcomes in quality of life,” Mr. Deschamps said.
Conversely, “reported quality of life scores are the best in patients where the cancer is discovered in an early, curable stage. Hence, efforts toward early detection and awareness are essential to avoid unnecessary deterioration in quality of life,” Mr. Deschamps said.
About the survey and respondents
Between August and November 2019, 2,943 prostate cancer patients from 24 European countries completed a web-based survey made available via the Europa Uomo website. The survey took around 20 minutes to complete and used three validated quality of life questionnaires, the EORTC-QLQ-C30, the EQ-5D-5L, and EPIC-26.
“The questionnaires were available in 19 languages, so every patient could answer in their mother tongue,” Mr. Deschamps pointed out, highlighting that this was a Europe-wide survey and was estimated to account for 0.1% of the patient population in Europe.
Countries with the highest number of respondents were Norway (n = 506), Sweden (n = 386), Belgium (n = 339), Germany (n = 253), Netherlands (n = 244), France (n = 234), Denmark (n = 188), the United Kingdom (n = 187), and Poland (n = 109).
The average age of respondents was 70 years at the time of the survey and 64 years at the time of diagnosis. Most patients (82%) were living with a partner.
Two-thirds of patients had received only one treatment for prostate cancer. This was most often radical prostatectomy, external beam radiotherapy, or active surveillance. Among the 22% of patients who had received two treatments, the therapies were most often a combination of surgery and radiotherapy, androgen deprivation therapy (ADT) and radiotherapy or chemotherapy, and active surveillance and surgery.
Fatigue and insomnia
According to the EORTC-QLQ-C30 symptoms questionnaire, fatigue and insomnia were particular problems for men with prostate cancer, as denoted by scores of 25 and 24, respectively, out of a possible 100. Low scores are associated with worse fatigue and insomnia.
The researchers focused their attention on how specific cancer treatments might influence fatigue. They found that radiotherapy doubled and chemotherapy tripled the number of patients reporting fatigue, when compared with active surveillance. The incidence of fatigue was 22% (n = 304), 33% (n = 246), and 11% (n = 179), respectively.
As for insomnia, “it’s bit of a mixed view,” Mr. Deschamps said. “We believe that the progression of disease is more important for insomnia. The only thing you can say is that chemotherapy leads to an increase in reported insomnia.”
Urinary continence and sexual function
The EPIC-26 questionnaire was used to look at the health-related quality of life domains of urinary and sexual function. Sexual function was the most impacted area.
“We often hear that decline in sexual functioning is a relatively small problem for prostate cancer patients, and the effect on their quality of life should not be exaggerated,” Mr. Deschamps said in a press statement.
“We also hear that prostate cancer is typically a disease of ‘old men,’ implying that the loss of sexual function is less relevant. This survey paints a different picture,” he added.
Higher EPIC-26 scores signify better function. For urinary incontinence, the score was 100/100 for active surveillance but 65/100 when active surveillance was combined with surgery and 71/100 for surgery alone. The combination of surgery and radiotherapy carried a score of 73/100 for urinary incontinence. Radiotherapy on its own had a score of 92/100, suggesting it was the addition of the surgery that was having a significant effect. The score for radiotherapy plus ADT was 100/100, and the score for chemotherapy was 86/100.
Chemotherapy appeared to have the worst effect on sexual function, with a score of just 12/100. Radiotherapy was not far behind at 17/100, and surgery alone was 21/100. When radiotherapy and surgery were combined, the score was 15/100.
Sexual function scores were also low for all the other treatments considered – 18/100 for radiotherapy and ADT, 26/100 for active surveillance and surgery, and 57/100 for active surveillance alone.
Implications for practice
“The data collected and the analysis done provide patients and healthcare professionals with a ‘snapshot’ on the impact of treatments based on the experience of fellow patients,” Mr. Deschamps said. “We hope these results will be used to establish and disseminate realistic expectations on the effects of different treatments for prostate cancer on [quality of life].”
“This study is important because it was initiated by patients and meant for patients,” noted Monique Roobol, PhD, professor of decision-making in urology at the Erasmus University Medical Center in Rotterdam, the Netherlands, where the survey data were analyzed.
“The questionnaires were completed unrelated to a hospital visit, which means respondents had more freedom to answer and provide insight into the effect of treatment on quality of life over a longer period,” she added.
“For me, the key point is that, as health care professionals, we have underestimated the impact on the quality of life for patients treated for prostate cancer,” said Hein van Poppel, MD, PhD, of University Hospitals Leuven (Belgium), who chaired the session in which the data were presented.
Arnulf Stenzl, MD, of Tübingen (Germany) University said in a statement that the survey provided valuable information. “It uses the same questionnaires used in standard clinical settings, but it is both qualitatively and quantitatively different to the kind of study usually undertaken, so it needs to be read alongside these previous studies,” Dr. Stenzl said.
There were several strong points, he said, such as the fact that EUPROMS was the largest study of its kind and thus would “reflect the impact of treatment on a wide range of patients, with different health systems.”
As an official EAU spokesperson, Dr. Stenzl added, “We completely agree that early detection and treatment is essential if we are to avoid problems with quality of life later on. It shows that, for many men, quality of life can be poor after most prostate cancer treatment, especially in advanced disease. This message is clear, and we need to listen to the voices of these patients.”
EUPROMS was conducted by Europa Uomo in conjunction with the Erasmus University Medical Centre in Rotterdam, the Netherlands. Funding was received from Bayer, Ipsen, and Janssen. The companies had no influence over any aspect of the study. The commentators did not have conflicts of interest to disclose.