Changes in usual lung symptoms are not universally recognized as exacerbations, according to a new study published in the journal Chest and being presented at the Chest 2021 Annual Meeting. The correlation between symptom-based exacerbation and the definition of an exacerbation based on health care utilization is not high. 

Identifying pulmonary exacerbations in patients with alpha-1 antitrypsin deficiency (AATD) is critical because they are associated with the progression of the disease and patients’ health-related quality of life.

In order to assess whether AATD patients could identify changes in respiratory symptoms as exacerbations, a team of researchers led by Charlie Strange, MD, analyzed data collected during the first year of the AlphaNet Step Forward study.

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Regular monthly phone calls were completed as part of the study. During the calls, patients were asked whether their respiratory symptoms changed such as shortness of breath, cough, fever, sputum color and amount, and new or worsening of wheezing. They were also asked whether they thought these symptoms met a threshold for a pulmonary exacerbation.

The results showed that 316 patients, aged 48 to 68, reported changes in their respiratory symptoms throughout the year. These patients reported a total of 797 changes in respiratory symptoms during the year. The most prevalent respiratory symptoms were shortness of breath and cough.

The patients identified a little less than half (48%) of these changes as pulmonary exacerbations, and 68% of them reported having at least 1 exacerbation during that year.

The researchers calculated that the events the patients considered being an exacerbation had a greater average number of symptoms than events that patients did not report as exacerbations.

When patients identified an event as an exacerbation they spoke to a pulmonary specialist in 39% of cases and went to a doctor’s office in 37% of cases. When events were defined as an exacerbation the treatment involved antibiotics in 81% of cases, steroids in 53% of cases, or both in 41% of cases. Patients self-treated events they did not recognize as exacerbations in more than half (56%) of cases.

“This study highlights the importance of patients’ perspectives in recognizing changes in pulmonary symptoms as exacerbation events,” the researchers concluded. 

The Chest 2021 Annual Meeting is being held virtually Oct. 17-20, 2021.


Choate R, Sandhaus R, Holm K, Mannino D, Strange C. Patient-reported pulmonary symptoms and exacerbations in a cohort of patients with alpha-1 antitrypsin deficiency. Chest. 2021;160(4):A1793-A1794. doi:10.1016/j.chest.2021.07.1628