Trial Information

Experiences of Episodic Breathlessness (EB) in Patients With Advanced Disease

OBJECTIVES:

- To explore the experiences of episodic breathlessness in patients with advanced disease
(i.e., primary and secondary lung cancer, chronic obstructive pulmonary disease [COPD],
chronic heart failure [CHF], and motor neuron disease [MND]).

- To explore the impact of episodic breathlessness on daily living.

- To explore the individual coping strategies to reduce burden of episodic
breathlessness.

OUTLINE: This is a multicenter study.

Patients undergo 1 to 2 interviews to collect data on experiences of breathlessness (in
general, at rest, and on exertion including symptom description, interpretation, and
meaning); experiences of episodic breathlessness (EB) (at rest and on exertion including
symptom description, interpretation, meaning, and definition); trajectory/course of EB
(onset/relief, time, and severity) and different types/trajectories of EB; impact of EB
(burden, emotional reaction [panic and fear], care burden, and dependencies); triggers of EB
(causes, situation, and settings) and predictability of EB; management of EB (coping
strategies, non-pharmacological and pharmacological management [including different
applications], worsen/relief, role of care in coping, and emotional/behavior strategies;
views on and experiences with services/professionals in management of EB and response to
professional advice; and attitudes towards the future, course of the disease, and awareness
of prognosis. At the end of the interview, the patient will be asked to draw a figure that
illustrates the trajectory of the episode. After the interview, a debriefing will be carried
out to give the patient the chance to express worries, potential harm, or any comments about
the interview. In addition to the interviews, further information will be collected
including demographics, diagnosis and co-morbidities, current pharmacological and
non-pharmacological treatments (medical history), functional status (Karnofsky), and
breathlessness characteristics (e.g., intensity, frequency, and duration). The interviews
will be tape-recorded, transcribed verbatim, and analyzed concurrently using Framework
Approach.