Symptoms and life changes after total pancreatectomy: a qualitative study

Area of Science:

• Surgical Oncology
• Gastroenterology
• Endocrinology

Background:

• Total pancreatectomy (TP) is a major surgery leading to lifelong pancreatic insufficiency.
• Limited qualitative data exists on patient experiences post-TP.
• Understanding patient-reported outcomes is vital for improving care.

Purpose of the Study:

• To explore patient experiences following total pancreatectomy.
• To investigate the impact of post-TP symptoms on health and life situations.

Main Methods:

• Qualitative design utilizing semistructured interviews.
• Prospective consecutive sampling of 20 patients at 6-9 months post-TP.
• Inductive thematic analysis to identify key experiences.

Main Results:

• Two primary themes emerged: 'Changes in everyday life' and 'Psychological journey'.
• Diabetes symptoms were the most significant life change, alongside exocrine insufficiency, feeding difficulties, and weakness.
• Psychological well-being was influenced by social and healthcare support, with a noted need for more information, especially regarding diabetes management.

Conclusions:

• Patients report insufficient support and education post-TP, particularly for diabetes management.
• Enhanced information provision and organized diabetes care are recommended for TP patients.
• Addressing the holistic needs of TP patients is essential for improving quality of life.