From Patient Reported Outcome Measures to individualized prostate cancer care

Prostate cancer (PCa) is the most common cancer among men in the Netherlands. Robot Assisted Radical Prostatectomy (RARP) for localized/locally advanced PCa is one of treatment options. However, choosing the right treatment can be challenging for patients. Decision aids, based on standardized clinical study information, are available. These aids are crucial due to the significant impact of treatment side effects on patients’ quality of life (QoL). RARP can lead to short-term complications like vesico-urethral anastomosis leakage and long-term issues such as urinary incontinence (UI) and erectile dysfunction (ED). Patient-reported outcome measures (PROMs) are essential in shared decision-making (SDM) and post-treatment follow-up. PROMs, utilized in clinical studies and patient communication, help manage RARP side effects and identify other potential issues. This thesis investigates PROMs' clinical roles, develops a predictive tool for UI post-RARP based on PROM responses, evaluates the effect of individualized continence predictions on treatment decisions, explores non-surgical factors in erectile function recovery, and assesses patients' sexual satisfaction post-RARP. Section I: PROMs in Clinical Practice Chapter 1 examines the response rates to digital and paper-based PROMs in localized prostate cancer patients undergoing RARP. Digital questionnaires were complemented by paper-based versions for non-responders. Higher response rates were observed for paper-based reminders, especially among older patients, indicating age as a significant predictor of response rates. Chapter 2 compares QoL recovery patterns post-RARP using interview and questionnaire-based assessments. Interviews tended to overestimate functional recovery compared to questionnaires, with continence scores strongly correlating with physical and overall QoL. Chapter 3 contrasts PROMs with clinician-reported outcomes for urinary continence and erectile function post-RARP. Findings revealed significant discrepancies. Clinicians underreported UI and overreported erectile function recovery (EFR). Despite these discrepancies, patient care and counseling were not affected. Section II: Urinary Incontinence After RARP Chapter 4 evaluates treatment choices following the introduction of individualized information about UI risk via the CPRED tool. Compared to standardized information, personalized data led to more patients reconsidering their initial treatment choice, particularly those at high risk of incontinence. This individualized approach improved treatment decision-making and postoperative outcomes. Chapter 5 investigates how clinicians communicate personalized UI risks and how patients perceive and use this information in their treatment decisions. Personalized risks, often communicated numerically and verbally, were appreciated and utilized by patients, though uncertainty was discussed infrequently. Chapter 6 explores the correlation between vesico-urethral anastomosis leakage and functional outcomes, and the benefits of cystograms post-RARP. Findings suggest selective cystograms for patients with larger prostates and preoperative LUTS to mitigate early acute urinary retention and voiding complaints. Section III: Erectile Dysfunction After RARP Chapter 7 assesses the impact of surgical and non-surgical factors, including physical activity, on EFR post-RARP. Physical activity emerged as a significant predictor of EFR beyond the first year post-surgery, alongside baseline erectile function and the extent of nerve sparing. Chapter 8 investigates postoperative sexual satisfaction, focusing on those experiencing ED. Satisfaction scores were significantly lower in patients with ED. Higher baseline satisfaction and increased sexual desire were associated with better postoperative sexual satisfaction, highlighting the need for comprehensive counseling on sexual function and satisfaction. Future Perspectives Efforts should focus on clustering PROMs to reduce patient burden and integrating PROMs into electronic medical records for better clinician access. Personalized risk information based on individual risk factors can enhance SDM and postoperative outcomes. Additionally, lifestyle modifications, such as increased physical activity, should be promoted for better recovery of ED post-RARP. Long-term prospective studies, potentially using smartwatches to monitor various health metrics, could further elucidate the impact of lifestyle on recovery. Addressing both sexual function and satisfaction is crucial, with referrals for psychological support when necessary to ensure holistic patient care post-RARP.