Study of Episodic Breathlessness in Patients With Lung Cancer or Other Advanced Disease
RATIONALE: Gathering information about experiences of episodic breathlessness in patients with advanced disease may help doctors learn more about the disease.
PURPOSE: This clinical trial is studying experiences of episodic breathlessness in patients with lung cancer or other advanced disease.
Other: medical chart review
Other: study of socioeconomic and demographic variables
Other: survey administration
Procedure: quality-of-life assessment
|Official Title:||Experiences of Episodic Breathlessness (EB) in Patients With Advanced Disease|
- Experiences of episodic breathlessness [ Designated as safety issue: No ]
- Impact of episodic breathlessness on daily living [ Designated as safety issue: No ]
- Individual coping strategies to reduce burden of episodic breathlessness [ Designated as safety issue: No ]
|Study Start Date:||January 2010|
|Study Completion Date:||October 2012|
|Primary Completion Date:||August 2010 (Final data collection date for primary outcome measure)|
- 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.
|King's College Hospital|
|London, England, United Kingdom, SE5 9RJ|
|Principal Investigator:||Steffen Simon, MD, MSC||King's College Hospital NHS Trust|