Purpose: The purpose of this study was twofold; to identify the psychosocial and supportive care needs of people affected by pancreatic cancer and to identify the areas of unmet need. Given the short survival time for people with pancreatic cancer, effective supportive care is imperative to enable best quality of life. The study revealed that dietary issues are an area of unmet need that severely impacted on quality of life and increased carer burden in people affected by pancreatic cancer.
Methods: A qualitative inquiry framework was used to explore participants’ perspectives and experience. Three groups of participants (N=35) were recruited from people accessing the Cancer Council Helpline across Australia or by direct referral from clinicians and cancer nurses: patients diagnosed with pancreatic cancer (N=12), carers/primary (N=18) and family/not primary carer (N =5). The carer/family group included a subgroup of bereaved participants (N=14). Sampling continued until saturation. Thematic content analysis was conducted utilizing NVivo9®.
Results: The findings revealed the major theme across all groups under quality of life was ‘managing complex and rapid physical changes’, especially relating to dietary issues. Issues related to ongoing and unresolved gastro-intestinal symptoms and lack of information about symptoms of exocrine insufficiency and malabsorption. This was compounded by a lack of routine dietary consultation; a perceived reluctance of clinician’s to prescribe enzyme supplements and poor understanding of dose guidelines.
Conclusion: Participants in all groups expressed distress relating to the effects of exocrine insufficiency. Pancreatic enzyme supplements associated with clear dosage guidelines and dietary advice resolved symptoms of malabsorption and markedly improved quality of life. For people affected by pancreatic cancer this is essential supportive care.