Symptoms, health and illness behaviour in cystic fibrosis

A health diary was administered for 28 consecutive days over 3 non-consecutive months to 53 children and adolescents with Cystic Fibrosis (age 11-17 years). Response rates were 96% for the first, 84% for the second and 58% for the third month. Ill health actions such as missing school or staying in bed, ranged from 0 to 21% of diary days and showed an apparent seasonal variation being highest in the month of May. Analysis of variance demonstrated significant association between health actions, use of additional medicines and disease severity although no such associations were found for worries and concerns and overall assessment of the day. Most were not very bothered by symptoms or complaints, the highest visual analogue score on a scale of 0-10 in a single patient was 2.4 for coughing. A striking finding was the disparity between perceived vulnerability and subsequent experience with predictions of common symptoms such as cough and shortness of breath scoring 4-5 times higher than actually experienced. These children and adolescents were coping very successfully with their disease although the disparity between perceived vulnerability and subsequent experience indicates some uncertainty about the effects of the disease and/or lack of understanding about medical therapy.