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

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 q ualitative study was undertaken to explore observed differences in the heal th professionals' and patients' perception of the illness, treatment and ca re of pancreatic cancer. Semi-structured one-to-one interviews were conduct ed with a range of six health professionals and 21 pancreatic cancer patien ts from two acute general hospitals and one teaching hospital within the We ssex Region. Grounded theory guided data collection and analysis. There was good agreement between the content of issues generated by profess ionals and patients with 42 relevant and specific issues identified. Howeve r, subtle differences in perception were observed when the context of why s uch issues were important was examined between the two groups. Health profe ssionals took a mechanistic view and saw the impact of each symptom or prob lem 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 prob lem to the patient and second, the success or otherwise of coping strategie s employed to maintain control. Five main coping strategies were identified . This study highlighted that there are important and specific quality of lif e issues which warrant a need for a pancreatic cancer QoL module. This stud y emphasises the fact that patients are the best source to describe their q uality of life. Health professionals should acknowledge the effect of copin g strategies when assessing the impact of symptoms and their treatment on p atients with pancreatic cancer. Copyright (C) 1999 John Wiley & Sons, Ltd.