Format

Send to

Choose Destination
Palliat Med. 2016 Mar;30(3):313-22. doi: 10.1177/0269216315600103. Epub 2015 Aug 26.

Patients' experiences of a new integrated breathlessness support service for patients with refractory breathlessness: Results of a postal survey.

Author information

1
Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London, London, UK charles.c.reilly@kcl.ac.uk.
2
Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London, London, UK Department for Palliative Medicine, Munich University Hospital, Munich, Germany.
3
Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London, London, UK.
4
Department of Asthma, Allergy and Respiratory Science, King's College London, London, UK.

Abstract

BACKGROUND:

We developed a new single point of access to integrated palliative care, respiratory medicine and physiotherapy: the breathlessness support service for patients with advanced disease and refractory breathlessness. This study aimed to describe patients' experiences of the service and identify the aspects valued.

DESIGN:

We attempted to survey all patients who had attended and completed the 6-week breathlessness support service intervention by sending them a postal questionnaire to self-complete covering experience, composition, effectiveness of the BSS and about participation in research. Data were analysed using descriptive statistics and thematic analysis of free text comments.

RESULTS:

Of the 70 postal questionnaires sent out, 25 (36%) returned. A total of 21 (84% (95% confidence interval: 69%-98%)) responding patients reported that they definitely found the breathlessness support service helpful and 13 (52% (95% confidence interval: 32%-72%)) rated the breathlessness support service as excellent. A total of 21 (84% (95% confidence interval: 69%-98%)) patients reported that the breathlessness support service helped with their management of their breathlessness along with additional symptoms and activities (e.g. mood and mobility). Four key themes were identified: (1) personalised care, (2) caring nature of the staff, (3) importance of patient education to empower patients and (4) effectiveness of context-specific breathlessness interventions. These were specific aspects that patients valued.

CONCLUSION:

Patients' satisfaction with the breathlessness support service was high, and identified as important to this was a combination of personalised care, nature of staff, education and empowerment, and use of specific interventions. These components would be important in any future breathlessness service.

KEYWORDS:

Palliative care; breathlessness; breathlessness support service; cancer; chronic obstructive; pulmonary disease

PMID:
26311570
PMCID:
PMC4778380
DOI:
10.1177/0269216315600103
[Indexed for MEDLINE]
Free PMC Article

Supplemental Content

Full text links

Icon for Atypon Icon for PubMed Central
Loading ...
Support Center