Patient-assessed health outcomes in chronic lung disease - What are they, how do they help us, and where do we go from here?

During the last 10 to 15 yr there has been an exponential increase in the development and use of instruments to measure the outcomes of health care from the patient's perspective. These instruments have appeared in the pulmonary literature, first in the assessment of COPD (1, 2) and more recently with asthma (3-6), cystic fibrosis (7, 8), and primary pulmonary hypertension (9). In March of 1996, the American Thoracic Society sponsored a meeting to summarize the state of the art in measuring patient-assessed health outcomes for patients with chronic obstructive lung diseases. The conference was followed by a round table discussion attended by major ''stake-holders'' in the assessment of patient-assessed outcomes in chronic lung disease, including academic investigators who have developed and used the instruments, representatives of the pharmaceutical industry interested in health outcomes in pharmaceutical research, representatives of managed care interested in health outcomes of the populations for whom they provide cafe, and representatives of a federal regulatory agency confronted with health outcomes in requests far the approval of pharmaceutical products. The purpose of this report is to review, from the perspective of the authors, some of the major points raised during the conference and the accompanying workshop. We will summarize what outcome measures are and some of the major instruments that have been used to assess outcomes of chronic lung disease. We will emphasize how patient-assessed clinical outcomes differ from traditional outcomes and the information they provide about care of patients with chronic airflow obstruction. Finally, we will summarize the current unresolved issues in this field and important future directions.