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

18 Years
Open (Enrolling)
Dyspnea, Lung Cancer, Metastatic Cancer

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Trial Information

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


- 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

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

Inclusion Criteria


- Diagnosis of advanced disease as defined by the following criteria:

- Lung cancer

- Primary lung cancer at all stages (small cell lung cancer [SCLC] and
non-small cell lung cancer [NSCLC])

- Cancer at any site with secondary tumor of the lung (lung metastasis)

- Chronic obstructive pulmonary disease (COPD)

- Stage III or IV of the Global Initiative for Obstructive Lung Disease
(GOLD) classification, which includes the airflow limitation measured by
spirometry FEV1 < 50%, FEV1/FVC < 0.7, and symptoms such as more severe
breathlessness, reduced exercise capacity, and repeated exacerbations

- Chronic heart failure (CHF)

- NYHA class II-IV heart disease, which includes symptoms such as dyspnea or
palpitation and an increasing limitation of exercise capacity or discomfort
at rest

- Motor neuron disease (MND)

- All patients suffering from breathlessness

- Suffering from episodic breathlessness as defined above at any level of severity


- Able to give informed consent

- Able to be interviewed

- No cognitive impairment (clinically judged by the principal investigator)

- No limited comprehension of the English language


- Concurrent disease-oriented therapies (e.g., chemotherapy, radiotherapy, or surgery)

Type of Study:


Study Design:


Outcome Measure:

Experiences of episodic breathlessness

Safety Issue:


Principal Investigator

Steffen Simon, MD, MSC

Investigator Role:

Principal Investigator

Investigator Affiliation:

King's College Hospital NHS Trust



Study ID:




Start Date:

January 2010

Completion Date:

Related Keywords:

  • Dyspnea
  • Lung Cancer
  • Metastatic Cancer
  • dyspnea
  • lung metastases
  • recurrent non-small cell lung cancer
  • recurrent small cell lung cancer
  • extensive stage small cell lung cancer
  • stage IIIA non-small cell lung cancer
  • stage IIIB non-small cell lung cancer
  • stage IV non-small cell lung cancer
  • Dyspnea
  • Lung Neoplasms
  • Neoplasm Metastasis
  • Neoplasms
  • Neoplasms, Second Primary