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Living With Advanced Pancreatic Cancer: Patients' Experiences of Daily Life
Jenny Bergqvist1,2, Johanna Hök Nordberg3,4, Kathrin Wode3,4,5
1Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden.
Background:
Pancreatic cancer is often diagnosed in late stages of the disease with only a 10% 5-year survival. The disease is associated with complex symptoms and psychological distress.
Aims:
The specific objective of this qualitative study was to explore patients' experiences of what symptoms and distress that had impact on their everyday life.
Methods:
We interviewed 31 patients with advanced pancreatic cancer nested within a randomized controlled study, called MISTRAL, about their everyday life using a semi structured interview guide. For data analysis we used interpretive description as described by S. Thorne to capture the subjective experiences of a population with the intention of improving clinical practice.
Results:
Three themes were identified from the interviews: "Unpredictability", "Psychological and social distress" and "Strategies for hope and normalization". Unpredictable and highly fluctuating levels of energy as well as psychological and social distress were reported as major concerns. Participants tried to normalize everyday life to maintain hope and cope with the situation.
Conclusions:
Unpredictable and highly fluctuating levels of energy and major psychological and social distress impact on patients' ability to cope with symptoms and treatment. Patient-centered care with interventions to reduce distress is important to improve quality of life among patients with advanced pancreatic cancer.
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