Prostate Cancer Study of Patient Experiences

Prostate cancer is one of the most common cancers among men worldwide, and its impact extends far beyond medical treatment, affecting many aspects of patients' lives. The PROSPEX (PROstate cancer Study of Patient EXperiences) project is designed to systematically capture the real-world experiences, challenges, and needs of individuals living with prostate cancer across diverse healthcare settings and backgrounds.

Objectives

The primary objectives of the PROSPEX study are:

• To gather comprehensive, patient-reported data on the psychological, social, and practical challenges faced by people with prostate cancer, including the impact on quality of life, relationships, work, and daily living.
• To identify disparities in access to care, supportive services, and information, as well as differences in patient experiences based on disease stage, treatment history, and demographic factors.
• To inform the development of patient-centered care strategies and support services by highlighting unmet needs and areas for improvement in prostate cancer care.

Methods

The PROSPEX survey is an international, anonymous, online questionnaire designed for patients who have been diagnosed with prostate cancer. The survey includes between 70 and 125 questions, depending on each participant's disease stage and treatment history. It covers a wide range of topics, including demographic and clinical information, emotional well-being, social support, financial concerns, experiences with the healthcare system, and the impact of prostate cancer on daily life. The survey is expected to take approximately 30 to 60 minutes to complete. Participation is entirely voluntary, and no sensitive personal data or contact information will be collected or used. The study is investigator-initiated and receives no external funding; the research team declares no conflicts of interest.

Data Analysis Plan

Survey responses will be analyzed using both descriptive and inferential statistical methods. Comparative analyses will be conducted to identify variations in patient experiences across different regions, healthcare systems, and demographic groups. Advanced statistical techniques, such as regression analysis, may be used to explore factors associated with differences in quality of life, access to care, and patient outcomes.

Expected Impact

By systematically documenting the lived experiences of prostate cancer patients worldwide, the PROSPEX project aims to provide valuable insights into the challenges and unmet needs faced by this population. The findings are expected to inform healthcare providers, policymakers, and advocacy groups, guiding the development of more effective, patient-centered care and support services. Ultimately, PROSPEX seeks to improve the quality of life and care outcomes for individuals living with prostate cancer and to contribute to the global understanding of patient experiences in this disease.

Inclusion criteria

Adults (aged 18 years or older). Diagnosed with prostate cancer at any stage (localized, locally advanced, metastatic, or recurrent).

Able to understand and provide informed consent for participation. Willing and able to complete the online survey in the available languages. Access to the internet and a device to complete the survey.

Exclusion criteria

Individuals who have not been diagnosed with prostate cancer. Individuals under 18 years of age. Inability to provide informed consent. Inability to complete the survey due to cognitive, language, or technical barriers.