DIFFERENT PERCEPTIONS OF DISEASE SEVERITY AND SELF-CARE BETWEEN PATIENTS WITH CYSTIC-FIBROSIS, THEIR CLOSE COMPANIONS, AND PHYSICIAN

Background - An investigation was carried out to determine whether pat ients with cystic fibrosis, their close companions, and physician perc eived the severity of the disease and the level of patient self care s imilarly. Methods - Sixty adults with cystic fibrosis (16-44 years), t heir close companion, and physician independently completed scales mea suring their perceptions of disease severity and patient self care on three occasions over a two year period. Percentage predicted forced ex piratory volume in one second (FEV(1)) and forced vital capacity (FVC) , Shwachman score, and weight for height were recorded following each assessment. Results - Patients and close companions considered the dis ease to be less severe than their physician. Fifty patients (83%) rate d their health as ''above/well above average'', and 49 (82%) close com panions rated the patient's health in the same way, but only 21 (35%) patients were considered by their physician to have mild disease. Diff erences also emerged in the estimation of patient self care; 48 close companions (80%) rated patients as ''very good'' or ''excellent'' in t heir self care, compared with 26 (44%) of the patients themselves. Onl y nine patients (15%) were considered to achieve this level of self ca re by their physician. Over the two year period the physician's rating s of severity increased in accordance with the decline in lung functio n. Patients' perceptions remained unchanged. Conclusions - From the ph ysician's viewpoint, patients and close companions underestimate the s everity of cystic fibrosis and overestimate patient self care. Patient s' perceptions remain constant over time even when their health is cli nically deteriorating.