Cancer patients as 'experts' in defining quality of life domains. A multicentre survey by the Italian Group for the Evaluation of Outcomes in Oncology (IGEO)

Although the subjective nature of quality of life is generally accepted, le ss attention has been paid to the procedure of selecting domains to be expl ored with questionnaires. To explore what contributes to cancer patients' q uality of life, a survey was conducted with the aim of identifying contents of quality of life using cancer patients as 'experts'. A questionnaire wit h open-ended items aimed at exploring the meaning of quality of life and at determining the contents of health and not health related quality of life, was submitted to a sample of cancer patients stratified by residence, canc er site and stage of disease. The 248 questionnaires received were transcri bed and broken down into phrases to allow coding. A content analysis was pe rformed, using as a conceptual framework, the domains identified by the Ita lian Society of Psycho-Oncology. Overall, 43 domains and a list of symptoms were identified. The two most frequently reported symptoms were pain (21.4 % patients) and fatigue (14.1% patients). Social relationships and psycholo gical domains were heavily represented. Twenty sub-domains related to the d omain `psychological well-being'. This study suggests that information on t he content of quality of life questionnaires to be submitted to people affe cted by a specific disease, should be derived by studying people suffering the specific disease. These results reinforce the criticism that available quality of life instruments are more likely to reflect the perspective of h ealth professionals than patients.