Prognosis communication in COPD
Research type
Research Study
Full title
A qualitative study exploring the experiences of patients and healthcare professionals in relation to Chronic Obstructive Pulmonary Disease (COPD), focused on their experiences of prognosis communication.
IRAS ID
204677
Contact name
Jennifer Quint
Contact email
Sponsor organisation
Imperial College London
Duration of Study in the UK
1 years, 9 months, 1 days
Research summary
The number of people living with and dying with Chronic Obstructive Pulmonary Disease (COPD) is growing globally, and it is currently the sixth most common cause of death in the UK (~30,000 deaths per year). Patients with advanced COPD have a symptom burden and mortality rate equal to or worse than many cancers. Despite this, they are less likely to access general palliative care such as advance care planning, or specialist palliative care services including symptom control, hospice admission and family/carer support. Existing literature has identified a number of organisational and individual level barriers to accessing palliative care, one of which is the difficulty of prognostic prediction in COPD.
In contrast to patients with incurable cancer, discussions with COPD patients about prognosis and end of life planning are often delayed or avoided until death is imminent. There is a lack of advance care planning and a focus on crisis management rather than symptom control and holistic care. Uncertainty and a fear of destroying hope seem to be prevalent amongst healthcare professionals, although this has not been explored in detail. Whether these fears are founded is unclear. There has been little exploration of prognosis communication in patients with COPD, their needs, experiences, and preferences. There is currently little evidence to suggest that decisions that clinicians make regarding whether, how and when to have prognostic discussions about COPD are based on patient preferences.
There has been very little research into the experiences and preferences of patients with diseases other than cancer in relation to discussions about prognosis. This study will investigate this understudied area of patient experience by interviewing patients living with COPD, and conducting focus groups with healthcare professionals involved in the care of such patients.
REC name
London - Chelsea Research Ethics Committee
REC reference
16/LO/1791
Date of REC Opinion
3 Feb 2017
REC opinion
Further Information Favourable Opinion