Recommendations for services for people living with chronic breathlessness in advanced disease: Results of a transparent expert consultation

Abstract

Chronic breathlessness is highly distressing for people with advanced disease and their informal carers, yet health services for this group remain highly heterogeneous. We aimed to generate evidence-based stakeholder-endorsed recommendations for practice, policy and research concerning services for people with advanced disease and chronic breathlessness. We used transparent expert consultation, comprising modified nominal group technique during a stakeholder workshop, and an online consensus survey. Stakeholders, representing multiple specialities and professions, and patient/carers were invited to participate. Thirty-seven participants attended the stakeholder workshop and generated 34 separate recommendations, rated by 74 online survey respondents. Seven recommendations had strong agreement and high levels of consensus. Stakeholders agreed services should be person-centred and flexible, should cut across multiple disciplines and providers and should prioritize breathlessness management in its own right. They advocated for wide geographical coverage and access to expert care, supported through skills-sharing among professionals. They also recommended recognition of informal carers and their role by clinicians and policymakers. Overall, stakeholders' recommendations reflect the need for improved access to person-centred, multi-professional care and support for carers to provide or access breathlessness management interventions. Future research should test the optimal models of care and educational strategies to meet these recommendations.

Holistic services for people with advanced disease and chronic or refractory breathlessness: a mixed-methods evidence synthesis

“…We have shared findings via open-access publications in scientific journals. 92,171,172 Plain English summaries have been completed for each study component. 182,183 This project has been presented at several meetings to varied audiences (see List 1: presentations) and additional abstracts have been submitted [e.g.…”

“…Our PPI group's help with dissemination so far, commenting on the systematic review paper 92 and co-authoring the stakeholder paper, 172 has ensured increased reporting clarity. In our project meetings, they have also suggested additional ideas for disseminations to increase reach (e.g.…”

Reviewing and applying qualitative research to inform management of chronic obstructive pulmonary disease

“…8 In this collection, a study using transparent expert consultation methods, which draws on qualitative techniques (gathering views, transparency, analysis of themes), has generated evidence-based recommendations for clinical practice, policy and research, emphasising the need for patient-centred flexible care for people living with chronic breathlessness in advanced disease. 9…”

Attitude change and increased confidence with management of chronic breathlessness following a health professional training workshop: a survey evaluation

“…Health professionals [11,12] and people living with chronic breathlessness [13] have expressed the need for education to better understand and manage chronic breathlessness. The Breathing, Thinking, Functioning (BTF) clinical model developed by Spathis et al [14] is used within the Cambridge Breathlessness Intervention Service [15][16][17] to (1) engage patients in self management; (2) explain the multiple factors contributing to breathlessness and (3) facilitate clinician choice of nonpharmacological interventions.…”