[Patients should be involved in the development of indicators].

Various generic and disease-specific instruments have been developed to measure quality of life. In a recent study the results of 3 standardized quality of life questionnaires were compared with qualitative research consisting of open interviews among 343 patients with inoperable lung cancer. The questionnaires did not fully cover all the factors that caused distress in lung cancer patients. For example, about a quarter of patients reported an overall form of distress instead of specific problems at some time point. In addition, 27% reported some element of their contact with the health care system as distressing. These aspects are not covered in quality of life questionnaires. Patients should always be involved in the development of questionnaires measuring quality of life or quality of care from the patients' perspective.