Patients evaluate a quality of life scale: whose life is it anyway?

Patients with cervical cancer were interviewed in a focus group format to obtain their retrospective views of quality of life (QL) in the context of cancer treatment. In addition, they were asked to evaluate the European Organization for Research and Treatment of Cancer's QL questionnaire (EORTC QLQ-C30) as an indicator of their QL. Ethnographic analysis of group transcripts revealed a number of dimensions of QL that these women did not believe were adequately addressed by the EORTC QLQ-C30. They were: (1) perceived control over one's body, (2) a sense of normalcy in one's life, (3) invasiveness experienced as a result of medical interventions, and (4) the degree of predictability of disease and treatment. Patients also indicated that QL was determined more by the meaning and value they placed on their experience than by the occurrence of specific functional changes, symptoms, or side effects. The results have implications for how QL is conceptualized. An alternative model of QL assessment, based on the patient as expert, is illustrated and described.