IMPROVER (Involving Men with Prostate Cancer in Engaged Research): Assessing Patient Experience With Testing, Diagnosis, And Surveillance.

BACKGROUND: Our understanding of patient experiences with prostate cancer testing for diagnosis and surveillance is limited. The aim of this study was to collaborate with patients and clinicians to understand their lived experience and unmet needs around the early detection, diagnosis and monitoring (active surveillance) of prostate cancer. METHODS: Two focus groups were held with patients (n = 20) and healthcare professionals (n = 16), to identify the main challenges in prostate cancer detection, diagnosis, and monitoring. This information formed the basis of an online questionnaire for broader dissemination. RESULTS: A total of 1138 analyzable responses were obtained from people tested for prostate cancer (69% tested positive) in Europe and the US. Only 29 healthcare professionals completed the survey. Almost one-third of people reported knowing very little/nothing about prostate cancer prior to testing. Prior disease awareness was significantly higher in those who tested negative (P < .0001). Most respondents (n = 857; 75%) felt informed about the steps involved in testing. Receiving written information was a key factor; 91% of those who felt uninformed were not given any written information. Overall, most people felt "satisfied" with the typical prostate cancer tests: PSA, DRE, mpMRI, and biopsy. However, dissatisfaction for prostate biopsy (12%) was almost double that of other tests (P < .0001). Most patients understood why each test was done, and felt that their results and next steps were clearly explained to them; though PSA scored lowest in all of these fields. Apart from PSA, test satisfaction was lower when used repeatedly for surveillance, compared to once-off detection/diagnosis. CONCLUSIONS: Greater public awareness and education around prostate cancer, as well as clear and accessible written information for patients at the beginning of their cancer journey is needed. Further research is needed into alternative, less invasive tests, particularly when used repeatedly in the surveillance population.

The unintentional spread of misinformation on 'TikTok'; A paediatric urological perspective.

INTRODUCTION: 'TikTok' is a social media application based on the publication of short videos that has accumulated over 1.1 billion users worldwide since its launch in 2016. With the use of 'TikTok' on the rise, there is an increasing tendency for patients or family members to seek medical information online. OBJECTIVE: We aim to assess the authenticity of information being spread on 'TikTok' on common paediatric urological presentations by comparison to current up to date guidelines provided by the European Association of Urology (EAU). MATERIALS AND METHODS: A search for a variety of paediatric urology conditions was performed on 'TikTok'. Videos were subsequently screened based on strict pre-defined criteria. The content and claims of each video were compared to up-to-date guidelines to reveal whether or not they complied with standards set by the European Association of Urology (EAU). Information that correlated with that of the guidelines was then further classified by Oxford levels of evidence. RESULTS: 27 videos met our criteria with a combined total of 6,578,863 views, 308,700 likes and 5782 comments. Only 22.2% of videos contained information that can also be found in guidelines provided by the EAU. None of the included videos contained any cited evidence to reinforce statements that were being made. DISCUSSION: Misinformation lacking scientific evidence has been reported has been reported for various conditions on 'TikTok'. Patients, family members or caregivers without a medical background can have difficult verifying and ensuring the credibility of information posted on social media. CONCLUSION: The evolution of 'TikTok' has allowed the layperson to create content that can potentially reach millions of users worldwide. This study demonstrated that 'TikTok' can be used as a resource for health information, however is currently a pit of misinformation with the potential to cause harm to the user.