Supplemental tube feeding: qualitative study of patient perspectives in advanced pancreatic cancer

Abstract

Objectives Malnutrition is associated with poor quality of life and survival outcomes for patients with cancer, but is challenging to prevent or treat in pancreatic cancer due to the multifactorial drivers of nutritional decline. A novel application of percutaneous endoscopic gastrostomy with a jejunal extension tube to deliver supplementary nutrition may improve outcomes, and will be tested in a randomised controlled trial. This study explored the perspectives of people living with pancreatic cancer regarding the acceptability of this proposed intensive nutrition intervention, to elucidate appropriateness and anticipated barriers, and facilitate informed design of the planned trial. Methods Participants were patients with pancreatic cancer previously enrolled in a Pancreaticobiliary Cancer Biobank. Qualitative semi-structured interviews were conducted by telephone and transcribed verbatim for deductive thematic analysis. The Framework Model was used, with the Theoretical Framework of Acceptability as the analytical framework. Results 10 participants were recruited. Four overarching themes were developed from interviews: (1) deterioration in physical and mental well-being are consequences of debilitating nutrition impact symptoms; (2) willingness to participate depends on an individual threshold for nutritional deterioration; (3) predicted perceived effectiveness outweighed anticipated burdens and (4) adequate dietetic support is needed for maintaining a percutaneous endoscopic gastrostomy with jejunal extension feeding tube at home with confidence. Conclusions Most participants believed that the intervention would benefit people with advanced pancreatic cancer to maintain their nutrition throughout chemotherapy. Regular and ad hoc support was considered essential, and the degree of individual nutritional deterioration was identified as an important indicator for trial participation.