Background Episodic breathlessness is a common and distressing symptom for people with advanced lung cancer, impacting carers as well as patients. Previous research has quantified the symptom occurrence of episodic breathlessness, identifying the average frequency, duration and severity of episodes, but rarely explored the lived experience of these different aspects. More understanding of the distress associated specifically with episodic breathlessness would inform more appropriate treatment strategies.

Aims To explore the nature of the distress associated with episodic breathlessness and the extent to which each aspect is bothersome for people with advanced lung cancer.

Methods Semi-structured interviews, analysed with an interpretative phenomenological approach, were conducted with four participants recruited from a hospice in Essex. All participants had advanced lung cancer. Ethical approval was secured from NRES Committee London – Hampstead (15/LO/1423) prior to the start of the study.

Results A multifaceted relationship existed between participants’ perceptions of duration, frequency and severity in episodic breathlessness. The following key themes emerged: impact on self; searching for answers; impact of previous experience; emotional work of episodic breathlessness; difficulty in quantifying different aspects; identifying most bothersome aspects. Patients benchmarked severity against previous episodes. The unpredictability of severity and duration and constant assessment of potential triggers causing frequency engendered anxiety. Participants appeared to conflate severity and duration more than frequency, but one aspect often impacted a participant’s perceptions of the other two.

Conclusions Findings suggest a complex, subjective relationship between different aspects of episodic breathlessness. The importance of considering the whole symptom experience, rather than just symptom occurrence is highlighted. The emotional work of episodic breathlessness should be considered in its management, as well as the interaction between different aspects. Clinicians should be aware of differences between individuals and seek to understand their lived experiences of episodic breathlessness to ensure appropriate treatment of this difficult symptom.