Differences in perception of quality of life issues between health professionals and patients with pancreatic cancer

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Abstract
During the initial stages of development of a pancreatic cancer quality of life (QoL) module to supplement the EORTC core QoL module, the QLQ‐C30, a qualitative study was undertaken to explore observed differences in the health professionals’ and patients’ perception of the illness, treatment and care of pancreatic cancer. Semi‐structured one‐to‐one interviews were conducted with a range of six health professionals and 21 pancreatic cancer patients from two acute general hospitals and one teaching hospital within the Wessex Region. Grounded theory guided data collection and analysis. There was good agreement between the content of issues generated by professionals and patients with 42 relevant and specific issues identified. However, subtle differences in perception were observed when the context of why such issues were important was examined between the two groups. Health professionals took a mechanistic view and saw the impact of each symptom or problem as directly affecting quality of life perception. Patients’ perception of quality of life was mediated by the process of coping. This was grounded by two linked factors. First, the perceived threat of each symptom or problem to the patient and second, the success or otherwise of coping strategies employed to maintain control. Five main coping strategies were identified. This study highlighted that there are important and specific quality of life issues which warrant a need for a pancreatic cancer QoL module. This study emphasises the fact that patients are the best source to describe their quality of life. Health professionals should acknowledge the effect of coping strategies when assessing the impact of symptoms and their treatment on patients with pancreatic cancer. Copyright © 1999 John Wiley & Sons, Ltd.