Fatigue in advanced cancer -- meaning before measurement?

The fatigue experienced by patients with advanced cancer has received little attention either in clinical practice or amongst researchers. To date, attention has been directed at the fatigue experienced by patients receiving chemotherapy or radiotherapy, with little being directed at the experiences of patients with advanced cancer within the context of a rapidly declining health status. In light of the paucity of information available to inform practice a study was undertaken to explore the nature and impact of fatigue as experienced by 15 patients with advanced cancer, a relative or friend of their choice, and health care professionals involved with their care. The aims were threefold: (i) to gain further understanding of this debilitating problem from divergent perspectives; (ii) to identify potential intervention strategies to be evaluated in future studies; and (iii) to attempt to inform palliative care research methodology where previously poorly understood and inadequately articulated symptoms, such as the fatigue of advanced cancer, are addressed. This paper focuses on issues relating to the third of the three study aims. Seven men and eight women with a variety of cancers, predominantly breast, ovarian, lung and prostate cancer were interviewed. Demographic data, disease history, biochemical markers, weight, nutritional status and medication profile were also recorded. Patients completed visual analogue scales (VAS) recording perceptions of severity of fatigue and pain, and distress caused by the fatigue, during the previous week. Each patient also completed the Hospital Anxiety and Depression Scale (HADS). Following verbatim transcription, taped interviews were subject to processes derived from thematic content analysis, and Glaser and Strauss' constant comparative method. Case note data, VAS and HADS were subject to descriptive statistics. Each participant within this study articulated the importance of addressing the struggle of finding meaning in something as inherently disabling as the fatigue experienced. This led to the conclusion that valid and reliable measurement of complex facets of terminal illness is dependent on extrapolating meaning before undertaking measurement. This paper, drawing on patient focused data, sets out to support that assertion.