Patient perspectives on the daily burden of prostate cancer: an online patient study (Preprint)

Abstract

Prostate cancer is the second most common cancer in men. Due to medical advances and early diagnosis, long-term well-being and health-related quality of life (HRQoL) have become more important nowadays.

We performed an observational study to evaluate the impact of prostate cancer diagnosis and its treatments on patients' daily lives. This study also assessed the relationship between healthcare professionals (HCPs) and prostate cancer patients, the availability of supportive services and information, and related unmet needs.

An online survey was conducted on the patient platform Carenity. 72 patients undergoing treatment for prostate cancer answered 35 questions between October 2020 and March 2021, regarding the impact of prostate cancer on their daily lives, their relationship with their HCPs, and their expectations regarding treatment options and services that aim at improving their daily lives.

72 patients with prostate cancer completed the questionnaire. Mean age was 65 years, most patients were married or in a relationship (79%), 63% were retired. On average, patients were first diagnosed 5.7 years ago and were diagnosed at 60. 30% of the respondents were affected by the metastatic stage of the disease. The results highlighted the major difficulties that prostate cancer patients experienced along their patient journey. The reported effects were both physical and emotional, with the greatest impact on sexual life (mean impact of 7.6/10, 10 standing for the strongest impact), intimate life (6.4/10), and general mood (5.5/10). Most patients had discussions with HCPs about their daily lives and/or concerns and rated these conversations positively; at the time of the diagnosis (for 66% of patients) or when choosing the treatment (76%) the main contact person was the urologist, while the general practitioner was the one seen during follow-up visits (82%). However, the respondents mentioned they wanted their HCPs to provide more information and spend more time with them and listening to them. Prostate cancer patients' expectations regarding therapy mostly regarded its efficacy and a hope for a longer life (86%), as well as few side effects (66%). Respondents shared unmet needs for supportive services (53%) and access to information (21%). Most of the burdens reported were present whatever the stage of the disease. Differences in care preferences and in the level of impact on quality of life are observed regarding the cancer stage. A higher impact on different aspects of patients’ daily life reported by metastatic cancer patients (e.g., impact of the disease on patients’ mood, rated 6.3/10 vs 5.2/10 on average for non-metastatic cancer patients).

Patients with prostate cancer face a variety of burdens in their daily lives. It is important to address these burdens as early as possible by providing better information and supportive care as part of a personalized care pathway.