Objective: Disabling breathlessness is the most common
symptom of advanced cardiopulmonary disease. It is usually intractable,
even when patients receive maximal medical therapy for their underlying
condition. A pilot study was undertaken to evaluate a newly formed
palliative Breathlessness Intervention Service (BIS).
Methods: The methodology followed the Medical Research
Council's Framework for the Evaluation of Complex Interventions
(Phase I). Qualitative interviews were completed with patients and
relatives who had used the service and clinicians who had referred to it.
The focus of the interviews was the participants' experience of using
Results: Patients valued the positive educational approach
taken to breathlessness, emphasizing what was possible rather than what
had been lost. Non-pharmacological strategies, especially the hand-held
fan and exercises, were rated very helpful and new to patients.
Participants reiterated that breathlessness was frightening and isolating,
exacerbating the disability it caused: the easy access to advice and
flexibility of BIS helped to alleviate this. Participants wanted a written
record of the advice given. Carers welcomed the focus on their needs.
Clinicians valued sharing the management of patients with an intractable
Significance of results: This Phase I study has helped to
remodel the service rapidly by uncovering the aspects of BIS that users
find most valuable and areas that need change or improvement. The BIS
needs to provide written information, to reinforce and extend contacts
with other agencies to build on support it already provides for patients
and carers, and extend its flexibility and accessibility. Providing a
“drop-in” service and continuing education after the initial
program of contacts is completed could be a useful service development,
warranting further evaluation. A qualitative methodology involving service
users and referrers can help to shape service development rapidly.