| Autor: |
Brighton LJ; 1 Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK., Tunnard I; 1 Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK., Farquhar M; 2 School of Health Sciences, University of East Anglia, Norwich, UK., Booth S; 3 Department of Oncology, University of Cambridge, Cambridge Biomedical Campus, Cambridge, UK., Miller S; 1 Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK., Yi D; 1 Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK., Gao W; 1 Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK., Bajwah S; 1 Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK., Man WD; 4 National Heart and Lung Institute, Imperial College, London, UK.; 5 Harefield Pulmonary Rehabilitation and Muscle Research Laboratory, Royal Brompton & Harefield NHS Foundation Trust, London, UK., Reilly CC; 6 Department of Physiotherapy, King's College Hospital NHS Foundation Trust, London, UK., Ogden M; 7 Cicely Saunders Institute Patient and Public Involvement Group, King's College London, London, UK., Bailey S; 7 Cicely Saunders Institute Patient and Public Involvement Group, King's College London, London, UK., Ewart C; 7 Cicely Saunders Institute Patient and Public Involvement Group, King's College London, London, UK., Higginson IJ; 1 Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK., Maddocks M; 1 Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK. |
| Abstrakt: |
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. |
