Background Current policy demands that ‘quality’ end of life care should be universally available irrespective of illness but evidence on how this should be done in non-malignant disease lacking. The ‘lack of biographical disruption’ and uncertainty of the COPD disease trajectory makes this difficult within a service model predicated on identifying ‘transitions’ to palliative care. Therefore the authors require an approach that will capture the ‘needs’ of individuals with severe COPD and their carers, irrespective of which professional arena they come into contact with.
Aims To identify ‘events’ within the life-long disease trajectory of COPD, that can trigger an assessment of the holistic (supportive and palliative care) needs of patients with severe disease and their carers.
Method 1. Secondary analysis of transcripts from the ‘Breath of Fresh Air’ study (Pinnock et al., BMJ 2011; 342: d142) to identify candidate ‘events’ for consideration as triggers. 2. Consensus meeting of health and social care professionals to characterise a ‘trigger’ and prioritise candidate ‘events’ using a nominal group technique.
Results Eight candidate ‘events’ were identified: requesting a ‘Blue badge`, home adaptations, hospital admissions, increasing burden of disease, housebound, failure to attend an appointment, shifting priorities of care, increasing carer burden. The consensus meeting affirmed that a successful ‘trigger’ should be visible to patient/carer/health or social care professional, meaningful to all stakeholders involved, actionable (i.e amenable to an intervention). The candidate ‘events’ that reached consensus (>75% agreement) were requesting home adaptations, hospital admissions and being housebound.
Conclusion The multi-disciplinary group agreed the key characteristics required for an effective ‘triggers’, and prioritised three candidate events. These need to be explored with COPD patients and their carers, to understand their acceptability, attributability, reliability, feasibility and relevance of triggers in delivering quality care for people with severe COPD and carers.
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