ABSTRACT
Little research has been conducted on the experience of pancreatic cancer from a patient's perspective. Several factors suggest that trajectory models of chronic illness or other cancers cannot be applied to pancreatic cancer. Within this grounded theory study, 26 problem-centred interviews were conducted with people with pancreatic cancer from Germany. A cancer-specific trajectory model was developed, depicting both curative and palliative courses. Two successive phases form the core: Immediately after diagnosis, there is an acute phase in which patients focus on mere survival, attempt to overcome the short-term consequences of pancreatic cancer and search for information. This initial phase is followed by a circular phase of living on with pancreatic cancer, characterized by adaptation to the long-term consequences of the disease and a repeated experience of fear of recurrence or progression and threat in the context of follow-up examinations. Understanding disease trajectories from a patient's perspective enables health professionals better to understand patients' needs, concerns, and fears and better support them in coping. Trial registration: German Clinical Trials Register, DRKS00020251, 13.01.2020.
ABSTRACT
INTRODUCTION: Pancreatic cancer is a malignant disease with one of the highest cancer-specific mortality rates. Coping with it probably differs from other malignant diseases. This scoping review was intended to explore and characterise academic literature related to the coping in patients with pancreatic cancer. METHODS: Eight databases were searched for primary and secondary studies and reviews reporting on coping with pancreatic cancer (adenocarcinoma) in adults in English or German language, regardless of publication date or study design, which were then analysed and summarised by narrative synthesis. RESULTS: Of 1472 publications identified, 9 articles and book contributions published from 1989 to 2020 in the USA, Europe and Australia met the inclusion criteria. The two main aspects covered were the confrontation with coping tasks, and the reciprocally associated coping with these challenges. In particular, the coping tasks revealed some pancreatic cancer-specific features, such as an increased incidence of depression and anxiety or certain digestive problems, whereas applying of coping strategies seems to be more like the coping behaviours known from the literature for other severe or cancer diseases. CONCLUSIONS: Patients with pancreatic cancer experience various health issues and face various quality of life changes and coping tasks. Disease-specific contextual factors, usually consisting of late diagnosis at an advanced stage, rapid progression and often poor prognosis, as well as disease-specific challenges are major differences compared with other malignancies or serious illnesses. However, the coping strategies applied do not seem to differ in principle. Currently, no pancreatic cancer-specific coping model exists.
