Evaluation of palliative care - Part I: Quality-of-life questionnaires for the terminally ill

When development is part of healthcare practice, evaluation is crucial to allocate available finite resources. This implies a highly necessary but difficult task: recognizing and quantifying the content of healthcare practices. The findings can be useful for establishing a coherent healthcare policy. The purpose of this review of the literature on palliative care was to examine methods for quality-of-life assessment in the terminally ill (part I) and for healthcare team self-auditing (part II). In this first part, we first describe the five parameters retained by Higginson (1) for the application of metrological qualities to the development of evaluation tools for quality-of-life assessment: validity, reproducibility, sensitivity, acceptability and interpretability. Current discussion has focused on the capacity of these questionnaires to express the patient's real preoccupations. Much of the debate has arisen because most of the questionnaires were developed from expert reports rather and from patient narratives. Three teams have however developed patient-centered questionnaires for the terminally ill. It would be useful to check the scientific value of this new generation of tools. We were unable to find any work examining the possible deleterious effects of the questionnaire on the patient. There has been no study coupling use of a questionnaire with independent collection of patient-provided data. This method, elaborated for the Qalidovie study (to be published) was developed in Grenoble in 1994. Applied to these new tools, this method might be helpful to validate or invalidate the postulate that measurement might alter quality-of-life.