Be clear about chronic breathlessness
Research type
Research Study
Full title
Development and refinement of a clinician consultation-aide intervention to support effective chronic breathlessness discussions with patients and their family carers
IRAS ID
340582
Contact name
Flavia Swan
Contact email
Sponsor organisation
University of Hull
Duration of Study in the UK
0 years, 11 months, 27 days
Research summary
Breathlessness is a frightening experience that stops people doing activities that are important to them. It is common, affecting nearly all people with long-term heart and lung diseases. However, clinicians do not routinely talk about breathlessness with patients and, if they do, they find it hard to explain clearly. In long-term conditions, patients may assume breathlessness is something to be ‘put up with’ and stop telling their clinicians about it.
If nothing is said, or advice is misunderstood, then people with breathlessness will not know there are proven ways to help relieve the symptom. We do not know the best way for clinicians to explain what chronic, or long-term, breathlessness is, or which words and phrases are most helpful, easy to understand and which support self-management.
The aim is to codesign a communication pack (‘Pack’) to help clinicians talk with patients and family supporters about breathlessness routinely in a way that helps them understand what it is and encourages them to use daily self-help techniques.
The study is in 2 parts:
1. To develop the prototype Pack (HRA ethics not required).
2. To refine the Pack (HRA ethics is required). This will be conducted as follows:
Two respiratory clinicians will conduct audio-recorded clinical appointments with or without the Pack with patients with chronic lung conditions and their supporters who are attending out-patients at Castle Hill hospital, Hull. We will interview patients and supporters post appointment, and we will ask patients and clinicians to complete a post Pack survey.
We will use the findings to refine the Pack and supporting materials to produce a communication Pack ready for testing in a clinical trial and have a better understanding of how best to discuss breathlessness with patients and supporters relevant for immediate use.REC name
London - Hampstead Research Ethics Committee
REC reference
26/LO/0162
Date of REC Opinion
27 Feb 2026
REC opinion
Further Information Favourable Opinion