This small study also found that current quality of life questionnaires given to these patients do not fully capture their views — especially in failing to measure life changes linked to this disease since its onset.

The research, “The missing ingredient”: the patient perspective of health related quality of life in bronchiectasis: a qualitative study,” was published in the journal BMC Pulmonary Medicine.

While various questionnaires assessing health-related quality of life (HRQL) are given to bronchiectasis patients, few studies have compared which might be most appropriate to them.

The adoption of a patient-led model in clinical research marks a shift from the traditional approach, in which doctors decide on appropriate outcome measures when testing treatments. Widely used bronchiectasis treatments may only result in small changes within such questionnaires, and researchers suggested these small change may be because clinicians are unable to measure what is most important to patients.