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SAGE Publications, Palliative Medicine, 3(30), p. 313-322, 2015

DOI: 10.1177/0269216315600103

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

This paper is made freely available by the publisher.
This paper is made freely available by the publisher.

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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.