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

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


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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Delivery of Health Care, Integrated / organization & administration
  • Delivery of Health Care, Integrated / standards*
  • Dyspnea / therapy*
  • Empathy
  • Female
  • Humans
  • Male
  • Middle Aged
  • Palliative Care / organization & administration
  • Palliative Care / standards*
  • Patient Education as Topic / standards
  • Patient Satisfaction*
  • Professional-Patient Relations
  • Quality of Health Care / standards*