Enabling patient-centred care in advanced COPD: identifying care and support needs.
Chronic obstructive pulmonary disease (COPD) is a chronic progressive condition with high symptom-burden, accounting for one death every 20 minutes in England and Wales. Patient-centred care takes into account patient needs and preference but we lack fundamental research on care needs in advanced non-malignant disease and tools to identify them in clinical practice, to enable this. This paper describes unmet care needs of patients with advanced COPD and potential ways to identify needs to enable patient-centred care.
Mixed-method interviews with a population-based cohort of patients with advanced COPD recruited to the Living with Breathlessness study, their informal carers and key clinicians. Quantitative data include validated patient measures of function, need and service use analysed using descriptive statistics. Purposively sampled multiple-perspective qualitative data on needs and experiences of care analysed using a framework approach.
235 patients were recruited: mean age 71.6 years (SD 10.3), 61% male, mean MMRC dyspnoea scale 3.68 (SD 1.04), mean CAT score 23.4 (SD 7.5). Patients identified symptoms they had not reported to clinicians and unmet needs for support with practical tasks, personal care, psychological support and information. Patients' ability to spontaneously articulate need was limited. Service contacts were predominantly in primary care. Descriptions of primary and secondary care contacts could be characterised as predominantly reactive. When asked about the quality of care some responded with what care?: the care element of service contacts was invisible to some. Service contacts appeared to be driven by organisational and medical agendas rather than patient-centred.
Shifting the focus of care beyond organisational and medical agendas in advanced COPD to a more patient-centred approach requires the proactive identification of need, prompted by clinicians. This could be facilitated by a brief structured holistic tool, grounded in patient data, yet feasible for use in clinical practice.
- Morag Farquhar, King's College London, London, UK
- Carole Gardener, King's College London, London, UK
- Caroline Moore, King's College London, London, UK
- Hanne Butcher, King's College London, London, UK
- Gail Ewing, King's College London, London, UK
- Patrick White, CUHNFT, Cambs, UK
- Sara Booth, CCS, Cambs, UK
- Sophie Howson
- Ravi Mahadeva, CCS, Cambs, UK