Six recommendations for improving care and support in advanced COPD: evidenced from a population-based, mixed method, multiple-perspective, longitudinal study

Background: Chronic obstructive pulmonary disease (COPD) is a progressive condition with high symptom burden. Advanced COPD management should relieve symptoms, optimise daily functioning and reduce carer burden, yet there is limited enactment of policy-advocated person-centred approaches to care and support. The Living with Breathlessness Study sought to establish evidence-based recommendations to inform a new paradigm to improve care and support in advanced COPD. Methods: Comprehensive multiple-perspective longitudinal evidence was collected on care, support, functioning and needs in advanced COPD from a population-based cohort of over 500 patients, their unpaid/family carers and health care professionals through semi-structured interviews and validated outcome measures over an 18-month period. Quantitative data analysed using standard descriptive statistics, numerical and univariate analyses, and qualitative data using a Framework approach. Recommendations were then generated through three linked strategies: (1) an expert multidisciplinary group, (2) a stakeholder workshop and (3) a stakeholder survey. Results: Six inter-related recommendations emerged, linked by the concept of proactive person-centred care, supported by action points to enable delivery. Recommendations in brief: (1) stop focusing on the challenge of prognostication as a barrier to meeting need, (2) change targets to incentivise person-centred care, (3) enable identification of patient support needs, (4) identify and support carers, (5) identify and respond to psychological morbidity, (6) change societal understandings of COPD, breathlessness, palliative care and informal carers. The recommendations garnered significant support from stakeholders, with caution regarding ease of implementation. Conclusions: Enactment of the resulting six evidence-based recommendations, through their action points, could inform a new paradigm to improve care and support in advanced COPD recognising the slow relentless progression of non-malignant disease, and its effect on patients and their carers. They hold potential for other patients and unpaid/family carers who are living in between conventional disease management and end-of-life care, and for those HCPs striving to support them.