Longitudinal assessment of treatment information needs in an advanced prostate cancer online support group, 2016-2025.

Abstract

e17056 Background: We see a growing trend in patients and caregivers using peer-led online communities for treatment advice. This study measured topic trends and tested automated topic tagging in these forums. Advanced prostate cancer treatment options changed quickly from 2016 to 2025. New developments in imaging, radioligand therapy, and PARP inhibitors have changed how advanced prostate cancer is managed. Patients and caregivers needed new information at the same pace. Methods: We analyzed 374,514 posts in 21,572 discussion threads from Malecare’s advanced-stage prostate cancer forum (2016-2019, 2021-2025). Threads were tagged for eight treatment domains using prespecified keyword rules. For validation, we used a stratified random sample of 405 threads, with 45 sampled per year. Two independent coders, blinded to automated tags, performed binary coding for each topic at the thread level. Percent agreement and Cohen's kappa were estimated with bootstrap 95% confidence intervals. Automated tags were compared with adjudicated gold-standard labels per topic, and sensitivity, specificity, false-positive rate, and false-negative rate were reported. Yearly prevalence estimates for radiopharmaceuticals and radioligand therapy, as well as for PARP and DNA repair, were corrected using the Rogan-Gladen adjustment. Results: Automated tagging identified an increase in discussions of radiopharmaceuticals and radioligand therapy from 14.8% of threads in 2016 to 26.1% in 2025. After correction, prevalence increased from 17.0% to 31.0%, showing a greater rise in interest. Similarly, discussions about PARP and DNA repair topics increased from 4.9% in 2016 to 12.7% in 2025. After correction, prevalence rose from 2.2% to 10.2%. Table 1 presents interrater agreement and automated tag error for all eight topics. Conclusions: Validated tagging enables tracking of patient information needs over time, enabling real-world telemetry to improve patient education. Online discussions mirrored important changes in advanced prostate cancer treatment and should inform the development of health education content. Clinicians and patient advocates can improve health education by adding detailed frequently asked questions about new treatments, including side effects and management, to better answer patient questions. Validation metrics by topic (n=405). Topic Agree (%) Kappa Sensitivity Specificity FPR FNR Androgen axis therapy 99.5 0.988 0.990 0.960 0.040 0.010 Imaging and staging 94.8 0.886 0.890 0.980 0.020 0.110 Chemotherapy 87.9 0.741 1.000 0.990 0.010 0.000 Radiopharmaceuticals and radioligand therapy 95.8 0.875 0.820 0.990 0.010 0.180 PARP inhibitors and DNA repair 95.1 0.718 1.000 0.970 0.030 0.000 Immunotherapy 96.3 0.853 0.850 1.000 0.000 0.150 Clinical trials 80.7 0.622 0.710 0.990 0.010 0.290 Treatment sequencing and resistance 71.6 0.474 0.600 0.730 0.270 0.400