Purpose: Pancreatic cancer is a fatal cancer with a median survival from diagnosis of around 5 months Speer et al. (Med J Aust 196(8):511-515, 2012). Given the short survival time for people with pancreatic cancer, effective supportive care is imperative to enable best quality of life. This article presents an unexpected finding from research into the psychosocial supportive care needs of people affected by pancreatic cancer that management of pancreatic exocrine insufficiency is an area of unmet need that severely impacts on quality of life and increases carer burden in people affected by pancreatic cancer.
Methods: A qualitative inquiry framework was used to explore participants' perspectives and experience. Two groups of participants (N = 35) were recruited across Australia from people accessing the Cancer Helpline or direct referral from clinicians/nurses: patients diagnosed with pancreatic cancer (N = 12) and carers/family (N = 23) including a subgroup of bereaved participants (N = 14). Sampling continued until saturation. A thematic content analysis was conducted.
Results: The findings revealed that the major quality of life theme was difficulty in managing gut symptoms and complex dietary issues. Issues were related to lack of information about malabsorption and managing symptoms of pancreatic exocrine insufficiency. This was compounded by a lack of routine dietary consultation: perceived reluctance of clinicians to prescribe enzyme supplements and poor understanding of dose to diet guidelines.
Conclusion: Participants expressed distress relating to the effects of pancreatic exocrine insufficiency. Pancreatic enzyme supplement therapy with clear dosage guidelines and associated dietary advice could resolve symptoms of malabsorption and markedly improve quality of life. For people affected by pancreatic cancer, this is an essential supportive care.