Where and by whom do patients want to be cared for: Preferences for the Breathlessness Support Service in England?

Abstract

Background: Chronic breathlessness is associated with reduced health related quality of life and high service utilisation. Breathlessness Support Service (BSS), combining palliative and respiratory medicine, was developed to address the unmet needs of patients with chronic breathlessness. Aims: To identify factors of BSS valued by potential users (older patients (65≥) and families) and suggest models of BSS to be prioritised. Method: Face to face interviews among patients with COPD, lung cancer or interstitial lung disease, and carers. Discrete choice experiment attributes were determined from literature, expert consultation and interviews. Regression was used to analyse the data and free text answers to open-ended questions were thematically analysed. Results: 6 attributes (consultation; review; additional support; expectation for mobility & health service use; waiting time) were identified. There were 190 patients and 68 carers from 9 sites in England. Any BSS was preferred to no service. BSS with a consultant was preferred but BSS with a GP or nurse at GP clinic was not. Expectation for mobility or health service use was not important but review of medicinal treatments and waiting time was. Carers preferred additional support and patients preferred a consultant. GPs were thought to lack breathlessness specialism. GP surgery was avoided by some patients due to infection risk. Conclusion: Older patients and carers want services provided by consultant, review of medicinal treatments, home visit by a therapist and support from a social worker. GP’s role in caring for this population needs reconsidering. BSS based on user’s preferences will improve acceptance and outcomes.