Development and initial validation of the bronchiectasis exacerbation and symptom tool (BEST)

Abstract

Background: Recurrent bronchiectasis exacerbations are related to deterioration of lung function, progression of the disease, impairment of quality of life, and to an increased mortality. Improved detection of exacerbations has been accomplished in chronic obstructive pulmonary disease through the use of patient completed diaries. These tools may enhance exacerbation reporting and identification. The aim of this study was to develop a novel symptom diary for bronchiectasis symptom burden and detection of exacerbations, named the BEST diary. Methods: Prospective observational study of patients with bronchiectasis conducted at Ninewells Hospital, Dundee. We included patients with confirmed bronchiectasis by computed tomography, who were symptomatic and had at least 1 documented exacerbation of bronchiectasis in the previous 12 months to participate. Symptoms were recorded daily in a diary incorporating cough, sputum volume, sputum colour, dyspnoea, fatigue and systemic disturbance scored from 0 to 26. Results: Twenty-one patients were included in the study. We identified 29 reported (treated exacerbations) and 23 unreported (untreated) exacerbations over 6-month follow-up. The BEST diary score showed a good correlation with the established and validated questionnaires and measures of health status (COPD Assessment Test, r = 0.61, p = 0.0037, Leicester Cough Questionnaire, r = − 0.52,p = 0.0015, St Georges Respiratory Questionnaire, r = 0.61,p < 0.0001 and 6 min walk test, r = − 0.46,p = 0.037). The mean BEST score at baseline was 7.1 points (SD 2.2). The peak symptom score during exacerbation was a mean of 16.4 (3.1), and the change from baseline to exacerbation was a mean of 9.1 points (SD 2.5). Mean duration of exacerbations based on time for a return to baseline symptoms was 15.3 days (SD 5.7). A minimum clinically important difference of 4 points is proposed. Conclusions: The BEST symptom diary has shown concurrent validity with current health questionnaires and is responsive at onset and recovery from exacerbation. The BEST diary may be useful to detect and characterise exacerbations in bronchiectasis clinical trials.

Monitoring daily symptoms and (self-reported) exacerbations in patients with bronchiectasis: a prospective study

“…Another factor that may have contributed to the low self-perception was the daily variability of the symptoms, making it difficult to distinguish symptoms that characterize the occurrence of mild exacerbations. Figure 3 illustrates the fluctuation of symptoms (scores) over time, clearly demonstrating that some patients have symptoms every day (patients 2, 3,4,5,6,7,8,9,10,11,12,14,15,16,22,23,24,25,26,27,28), while others are mostly asymptomatic (patients 5,17,18,19,20,21). Patients who have a productive cough and dyspnea every day will find it more difficult to notice changes in the intensity of these symptoms.…”

“…In line with our findings, Artaraz et al . [ 11 ], in a study to develop a symptom diary to detect exacerbation in individuals with bronchiectasis, found that the baseline score, which included cough, dyspnea, fatigue, color of the sputum and fever, had a good correlation with the CAT variables, Leicester questionnaire and SGRQ. These observations allow us to hypothesize that the symptom scores objectively capture the individual’s uniqueness and may eventually be useful for the patient to improve his/her self-perception, thus contributing to the self-management of the disease.…”

Active cycle of breathing technique versus oscillating PEP therapy versus walking with huffing during an acute exacerbation of bronchiectasis: a randomised, controlled trial protocol

“…A blinded assessor will complete monthly phone calls using questions investigating clinical status in the last month including symptoms, hospital admissions and use of antibiotic therapy (and comparing participant responses to these questions to the international definition of an exacerbation for bronchiectasis [ 7 ]. Participants will also complete the Bronchiectasis Exacerbations and Symptoms Tool (BEST) daily from time of discharge from hospital to six month follow-up [ 51 ]. The BEST tool is a symptom diary, designed to detect bronchiectasis exacerbations, which involves six questions regarding breathlessness, sputum volume, cough, fatigue, sputum colour and cold and flu symptoms.…”

“…The BEST tool is a symptom diary, designed to detect bronchiectasis exacerbations, which involves six questions regarding breathlessness, sputum volume, cough, fatigue, sputum colour and cold and flu symptoms. It has been shown to be responsive to identifying exacerbations at onset and recovery for individuals with bronchiectasis [ 51 ].…”

Surgical Management of Bronchiectasis

“…Patients with bronchiectasis report worse quality of life (QOL) than do persons in the general population [74,75]. Recurrent bronchiectasis exacerbations are related to deterioration of lung function, progression of the disease, impairment of quality of life, and increased rate of mortality [76]. Postoperative QOL and the functional consequences of lung resection (pulmonary function and exercise capacity) are poorly addressed.…”