Background Chronic obstructive pulmonary disease (COPD) is progressive, with high symptom- and carer-burden, accounting for one death every 20 min in England and Wales. Patient-centred care takes into account patient needs and preferences. Research on care and support needs in advanced COPD, and ways to identify them in clinical practice, is limited.
Methods We conducted mixed-method interviews with a population-based cohort of 235 well-characterised patients with advanced COPD (meeting 2/6 clinician-defined criteria) and their carers (n = 115 family and friends who support them), and qualitative interviews with purposively sampled key clinicians (n = 45; primary and secondary care). 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.
Results Patients’ mean age was 71.6 years (SD 10.3), 61% were male and 30% lived alone. Their mean MMRC dyspnoea scale was 3.68 (SD 1.04) and mean CAT score 23.4 (SD 7.5). Mean HADS anxiety and depression scores were higher than population norms: anxiety 7.31 (SD = 4.69); depression 6.72 (SD = 3.53). Patients identified symptoms they had not reported to clinicians; just over a fifth with self-identified anxiety/depression had not reported these. Patients had unmet needs for support with practical tasks, personal care, psychological support and information; their ability to spontaneously articulate needs was limited and we found little evidence of holistic needs assessment by clinicians. 20% could not identify a clinician who supported them. Service contacts were mainly in primary care and descriptions of service contacts (primary/secondary) could be characterised as predominantly reactive: the “care” element of contacts was invisible to some. Feelings and worries were rarely discussed. Service contacts appeared driven by organisational and medical agendas rather than patient-centred.
Conclusions Service contacts in advanced COPD are predominantly reactive and brief, with limited evidence of proactive engagement with patients and carers. Shifting the focus beyond organisational and medical agendas to a more patient-centred approach requires the proactive identification of patient need, prompted by clinicians. This could be facilitated by a brief structured holistic tool, grounded in patient data, for use across clinical settings.