The Bronchiectasis Exacerbation Diary: a novel patient-reported outcome for non-cystic fibrosis bronchiectasis

What is it about?

Bronchiectasis is a disease in which an infection or another condition causes damage to the airways. The damage makes it difficult to clear mucus from the lungs. Mucus then builds up in the lungs and results in repeated infections and more injury to the lungs. Some symptoms of bronchiectasis are the following: • Daily cough with a lot of mucus; • Shortness of breath; and • Chest pain. When doctors test new treatments for bronchiectasis, they want the patients to keep track of their symptoms every day. This lets them spot when a patient may have a flare-up of their condition, called an exacerbation. A daily questionnaire completed by patients is a good way to keep track of symptoms, but there are no established questionnaires for doing this. The goal of this study was to create such a questionnaire. We first looked at published studies about bronchiectasis symptoms and spoke to doctors who are experts in lung diseases. We also spoke to patients with bronchiectasis to understand their point of view. Patients could take part in this study if they were 18 years or older and had bronchiectasis. A total of 20 patients were included in this study. During their interviews, patients described the symptoms of bronchiectasis and shared the impacts of their symptoms on their life. We called our questionnaire an electronic diary (eDiary) or the Bronchiectasis Exacerbation Diary (BED) for short. We updated the eDiary and created a final version based on feedback from patients during the interviews. The final eDiary allows patients to report on the following key symptoms: • Cough; • Mucus (how much, how thick, what colour, and whether it contains blood); • Shortness of breath; and • Tiredness. This new eDiary will be tested in a clinical study for a new medication to treat bronchiectasis.

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