The Lung Information Needs Questionnaire: Development, preliminary validation and findings.

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. alpha 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.