Abstract

BACKGROUND--An investigation was carried out to determine whether patients with cystic fibrosis, their close companions, and physician perceived the severity of the disease and the level of patient self care similarly. METHODS--Sixty adults with cystic fibrosis (16-44 years), their close companion, and physician independently completed scales measuring their perceptions of disease severity and patient self care on three occasions over a two year period. Percentage predicted forced expiratory volume in one second (FEV1) and forced vital capacity (FVC), Shwachman score, and weight for height were recorded following each assessment. RESULTS--Patients and close companions considered the disease to be less severe than their physician. Fifty patients (83%) rated their health as "above/well above average", and 49 (82%) close companions rated the patient's health in the same way, but only 21 (35%) patients were considered by their physician to have mild disease. Differences also emerged in the estimation of patient self care; 48 close companions (80%) rated patients as "very good" or "excellent" in their self care, compared with 26 (44%) of the patients themselves. Only nine patients (15%) were considered to achieve this level of self care by their physician. Over the two year period the physician's ratings of severity increased in accordance with the decline in lung function. Patients' perceptions remained unchanged. CONCLUSIONS--From the physician's view-point, patients and close companions underestimate the severity of cystic fibrosis and overestimate patient self care. Patients' perceptions remain constant over time even when their health is clinically deteriorating.