A qualitative systematic review of the psychosocial aspects of living with pancreatic cancer

Background: Despite improvements in the survival of many cancers, there has been little progress in pancreatic cancer outcomes due to difficulties in screening and early detection. Five-year survival rates are less than 5% overall and below 1% for inoperable tumours. Consequently, people diagnosed often face significant psychosocial challenges. However, research on these aspects of people’s pancreatic cancer journeys remains scarce globally. Therefore, this review seeks to deepen understanding of the experiences of people with pancreatic cancer in this area.
Aims: To identify, analyse, and synthesise empirical literature which answers the primary research question: ‘What are the psychosocial aspects of people’s experiences when receiving, living, and dying with (or surviving) a pancreatic cancer diagnosis?’
Methods: This qualitative systematic review observed PRISMA 2020 guidelines. CINAHL, Embase, MEDLINE, PsycINFO, Scopus, Web of Science, and the WHO Global Index Medicus databases were searched from inception until August 2024. 6,433 records were identified and 25 studies met inclusion criteria.
Results: Four key preliminary themes emerged: (1) psychological distress relating to three sub-themes: a) the shock of diagnosis, b) fears and uncertainty, and c) changes in identity and social roles; (2) the impact of symptom experiences on quality of life and social life, especially gastrointestinal issues secondary to pancreatic exocrine insufficiency; (3) coping mechanisms and sources of support, relating to three sub-themes: a) family support, b) hope, faith, and spirituality, and c) the health care team; and (4) information needs, communication, and decision-making.
Conclusion: This review emphasises the profound psychosocial challenges faced by people with pancreatic cancer and highlights the importance of interventions which address psychological distress, improve quality of life, and support coping mechanisms. Insights from this review can guide future research and inform the development of interventions which better support people navigating the complexities of a pancreatic cancer journey and meet their psychosocial needs.