Summary Study objectives Many chronic obstructive pulmonary disease (COPD) patients are dissatisfied with the information they are given. A brief questionnaire completed prior to the clinical encounter would assist health professionals identify areas of information need. Design Ten focus groups of 59 patients assisted in the process of questionnaire construction. Three hundred and four patients (return rate 63%) responded to a postal questionnaire. Results Twenty-one per cent did not know the name of their disease, 3% reported medication non-compliance and 8% were confused with medicines. Fifty-five per cent of patients were exercising inappropriately, 8% did not know what to do when breathing worsened and 36% did not know when to call an ambulance. All six of the Lung Information Needs Questionnaire domains discriminated significantly as a function of health professional contact. Retest reliability for the six domains varied between .66 and .98, and for the total score was .89. α was .62. Conclusions Patients can act as experts during the process of questionnaire construction. Information needs vary between patients but tend to be high for non-drug related aspects of self-management COPD. This questionnaire can be used to guide the clinical encounter.