Presentation (CTI)

OBJECTIVES: Pancreatic ductal adenocarcinoma (PDAC) is associated with poor survival, as most patients are diagnosed at an advanced stage when curative treatment options are limited. The SHIELD Horizon Europe project aims to improve early detection through a surveillance programme for individuals at increased hereditary risk. This study explored patient and caregiver experiences of pancreatic cancer in Sweden to inform user requirements for the SHIELD platform and associated clinical workflows.
METHODS: An online focus group was conducted with four long-term survivors of PDAC and two family caregivers recruited through PALEMA, a Swedish patient association. Discussions were guided by a structured questionnaire covering surveillance and testing, daily-life impact, emotional burden, healthcare experiences, future concerns, support needs, and digital technologies. Data were analysed using thematic analysis.
RESULTS: Participants strongly valued long-term surveillance and follow-up, linking regular monitoring with early detection, even among non-hereditary risk populations, identification of recurrence, reassurance, and improved outcomes. PDAC imposed a substantial burden on both patients and caregivers, affecting daily life, emotional wellbeing, and family dynamics. Scan-related anxiety, fear of relapse, and concerns about relatives’ future risk were prominent, while optimism, positivity, and support from patient organisations such as PALEMA were viewed as important coping resources. Healthcare experiences were characterised by fragmented care, communication gaps, limited coordination, and insufficient patient involvement in decision-making, often requiring patients to actively advocate for access to appropriate testing and treatment options. Digital platforms and artificial intelligence (AI) were considered useful for information provision, but not as substitutes for empathetic human interaction when communicating important medical information.
CONCLUSIONS: Findings highlight the need for early detection, surveillance, and a positive approach to pancreatic cancer among patients, families, and healthcare professionals. These insights may inform the development of a patient-centred PDAC surveillance programme that addresses both clinical and psychosocial needs.