The development of an intervention program to optimize psychosocial support in prostate cancer patients undergoing active surveillance

Active Surveillance (AS) has emerged as the preferred management strategy for men with low-risk and favorable intermediate-risk prostate cancer (PCa), aiming to avoid the morbidity associated with immediate radical interventions such as surgery and radiotherapy. AS presents a significant psychological paradox: patients must live with the clinical knowledge of harboring a malignancy while adopting a strategy of no immediate treatment. This "untreated" status often triggers significant distress, characterized by "PSA anxiety" and a latent fear of disease progression, which leads 5% to 13% of men to discontinue the protocol in the absence of medical progression.
This dissertation addresses the unmet psychosocial needs of men on AS by developing a nurse-led digital intervention. Guided by the Medical Research Council (MRC) Framework for Complex Interventions, the research utilizes stakeholder-driven co-creation to bridge the gap between clinical monitoring and the patient’s lived experience. The overarching goal is to foster salutogenesis and agency, transforming the surveillance experience from a passive state of "doing nothing" into a proactive path toward health promotion.
The study in chapter 2 employed an explorative qualitative design to investigate the psychosocial support needs of men on AS. Seventeen semi-structured interviews were conducted with low-risk PCa patients from two Dutch urology clinics, and data were analyzed using thematic content analysis facilitated by NVivo. The results revealed that while the initial diagnosis has a significant emotional impact, recurring medical examinations and waiting for PSA results are the primary triggers for long-term anxiety and uncertainty. Coping effectiveness was found to be dependent on the patient-physician relationship, the patient's locus of control, and disease acceptance. Effective coping strategies included proactive information seeking and social support, whereas ineffective strategies such as avoidance, denial, and substance abuse, impeded resilience. The findings highlighted an urgent need for reliable, early-stage, disease-specific information to facilitate acceptance and adaptation.
Chapter 3 describes a scoping review that was conducted to map existing evidence-based interventions capable of alleviating the psychosocial burden of AS. Following the PRISMA guidelines, six scientific databases were searched for studies published since 2009, resulting in the inclusion of 12 studies (9 quantitative, 1 qualitative, and 2 mixed-methods). The review categorized effective support into three major themes: information and education (tailored protocols and risk communication), coping and social support (peer engagement and professional psychological help), and lifestyle (physical activity, nutrition, and mindfulness). Key results indicated that providing transparent, just-in-time information to both patients and their partners significantly reduces distress. Furthermore, engaging in "self-health" through physical activity and dietary adjustments provided men with a vital sense of control and improved quality of life.
The consensus study in chapter 4 adopted the RAND/UCLA Appropriateness Method to reach consensus among stakeholders on the components of a psychosocial support program. A panel of 31 stakeholders, including patients, nurses, urologists, paramedics, and mental health professionals, participated in three consensus rounds to rate the relevance of interventions on a 9-point Likert scale. After a focus group session to address discussion items, consensus was established on 13 key interventions. These components span four domains: information and education (e.g., decision aids and shared decision-making), coping and support (e.g., structural assessment of psychosocial burden), physical wellbeing (e.g., LUTS and ED screening), and lifestyle (e.g., standard provision of nutritional and exercise guidelines).
A digital support program was design using the design thinking process in the study described in chapter 5. The consensus-driven interventions were operationalized into a digital prototype using Design Thinking principles. The process involved five phases: Empathy, Define, Ideate, Prototype, and Test. Empathy interviews with five experts and subsequent multidisciplinary brainstorming sessions led to the conceptualization of the "MijnAS" application. The prototype was developed iteratively with end-user input and subjected to heuristic testing by nine experts to evaluate usability. The final tool featured functional modules for logging PSA values, preparing for consultations using a "positive health" spider web, and accessing lifestyle advice and educational videos. While heuristic evaluations confirmed the application’s strength in navigational clarity and consistency, they also identified critical areas for refinement, specifically regarding error handling and help documentation. Ultimately, this development phase transformed theoretical support components into a tangible self-management tool aimed at fostering patient agency and self-efficacy during the surveillance trajectory.
A single-arm mixed-methods study evaluated the feasibility and acceptability of the MijnAS application across four Dutch urology clinics with 35 participants in chapter 6. Data collection included online questionnaires, application metadata, and 17 semi-structured interviews with patients and caregivers. The results showed a high recruitment rate (85%), though retention declined to 50% by study completion, primarily due to "survey burden". Acceptability was generally positive, with 73.4% of participants reporting approval. Objective metadata revealed that 65% of users registered PSA values and 32% used appointment preparation features. Qualitative insights further characterized the application as a vital "psychological anchor," providing essential reassurance and validation of the AS care path during vulnerable diagnostic and follow-up periods. The study identified "digital fragmentation" and a lack of integration with hospital electronic health records (EHR) as critical systemic barriers, highlighting that for such tools to remain sustainable, they must be embedded within the existing clinical ecosystem rather than functioning as standalone platforms.
The synthesis of this research demonstrates that the long-term success of Active Surveillance is contingent upon addressing the psychological demands of the trajectory. Findings reveal that uncertainty remains an inherent challenge, driving a significant need among men for lifestyle information and a greater sense of agency, promoting the ability to actively participate in and influence their own care. To address this, the developed application empowered participants, by facilitating consultation preparation, providing information and lifestyle guidance, thereby transforming the surveillance period into a proactive health trajectory. This shift toward self-management aligns with the framework of salutogenesis, which emphasize strengthening individuals' resources and capacity to maintain health and well-being, allowing men to move beyond passive monitoring toward a more resource-oriented and health-promoting experience.
The dissertation identifies a "digital dilemma": while tools like MijnAS are highly acceptable, their efficacy is limited if they remain standalone applications. To ensure sustainability, future efforts must move toward a hybrid care model where digital self-management is functionally integrated into hospital portals. In this model, the specialized nurse acts as a crucial "translator" between digital data, such as patient-reported outcomes or PSA trends, and the patient’s lived experience. Finally, the dissertation advocates for AS to evolve into a multidisciplinary care ecosystem that structurally embeds psychosocial monitoring as a standard of care, ensuring it remains a safe and patient-centered choice