Potential criteria for inclusion | Survey 2# | Survey 3¶ calculated ranking (1=most important) | Survey 4+ % agreement | |
Mean score | % agree | |||
Change in sputum volume and/or colour | 1.54 | 93 | 2 | 96 |
Increased cough | 1.64 | 89 | 1 | 100 |
New/increased haemoptysis | 1.86 | 79 | 8 | 92 |
Increased shortness of breath (parent/patient perceived) | 1.54 | 100 | 3 | 92 |
Increased respiratory rate | 2.14 | 64 | ||
Increased chest discomfort/chest pain | 2.07 | 75 | ||
Malaise, tiredness, fatigue or lethargy | 2.14 | 68 | 7 | 92 |
Decreased activity | 2.54 | NA | ||
Decreased exercise tolerance | 2.14 | 71 | ||
Temperature >38°C | 1.96 | 82 | 9 | 84 |
Anorexia or weight loss | 2.50 | NA | ||
Change in physical examination of the chest | 2.29 | NA | ||
Increased crepitations/crackles | 2.21 | 68 | ||
Increased wheeze | 2.43 | NA | ||
New radiographic changes indicative of a pulmonary infection | 2.18 | 75 | 5 | |
Decrease in pulmonary function of ≥10% from a previously recorded value (FEV1 % pred or FVC % pred) | 2.11 | 75 | 4 | |
Raised C-reactive protein | 2.79 | NA | ||
Prolonged erythrocyte sedimentation rate | 3.39 | NA | ||
Raised white cell count | 3.00 | NA | ||
Raised neutrophil count | 2.96 | NA | ||
Physician decision to change treatment because of perceived change in condition | 6 | 92 |
FEV1: forced expiratory volume in 1 s; FVC: forced vital capacity; NA: neither agree nor disagree. #: in Survey 2, participants (n=28) indicated whether each item should be included in the definition of pulmonary exacerbations (1=strongly agree; 5=strongly disagree). The mean score and the percentage of respondents who agreed are shown. ¶: items which were considered positively in Survey 2 were ranked in Survey 3 (n=25 participants); “physician decision to treat” was added to the list for ranking. We present the calculated rank score from all participants. +: in Survey 4 (n=25 participants), the final wording for included items was agreed. The items included in the final definition are in italics.