{
  "abstract": "Context 1 in 10 adults over 40 live with COPD costing the NHS over £2billion annually making this a pressing public health challenge. Despite medical advancements, many people face delayed diagnoses, inconsistent care and avoidable hospital admissions.Methods We undertook the largest qualitative analysis of lived experience in people with COPD (PwCOPD) and their carers in England, via focus groups, or one-to-one interviews, held in local settings (e.g., village halls, seminar rooms and places of religious importance). Questions were around the themes of COPD management, including symptoms, diagnosis and follow-up care. Each interview took approximately 1 hour. PwCOPD were recruited from primary and secondary care and all meetings were recorded, transcribed and analysed.Results 120 people (71 women) from 7 NHS regions participated, including 35 carers. The majority (73%) were over the age of 65. Almost 1 in 3 PwCOPD were widowed. PwCOPD were most likely to be managed by their GP alone (57%). The majority of PwCOPD had had an exacerbation in the last 12 months (65%) and 16% reported being hospitalised with a severe exacerbation on more than 1 occasion.A consistent picture emerged including gaps in care, poor communication between services and an urgent need for a more integrated, patient-centred approach to reduce unwarranted variation and improve the quality of services and support. PwCOPD expressed a strong interest to hear and take part in clinical research, but almost no-one had ever been offered this. The patient voices described:delays in diagnosis and a lack of information about COPD, with a diagnosis occurring after many years of symptoms and illness.difficulties accessing essential services including GP appointments, specialist care and pulmonary rehabilitation.a lack of support for carers, the majority of whom had little information to access financial support.Conclusion This is a powerful insight into the lived experience of PwCOPD. We produce nine recommendations which map to the three shifts in care proposed in the NHS 10-year plan, refined into four fundamental pillars of COPD care: diagnosis, information, monitoring and treatment, which provide a roadmap for meaningful changes in services ( figure 1).Abstract S9 Figure 1",
  "authors": [
    {
      "affiliations": [
        "King’s College London, London, UK"
      ],
      "name": "S Thomas"
    },
    {
      "affiliations": [
        "King’s College London, London, UK"
      ],
      "name": "REK Russell"
    },
    {
      "affiliations": [
        "King’s College London, London, UK"
      ],
      "name": "M Bafadhel"
    }
  ],
  "title": "S9 A matter of life and breath: understanding the needs of people with chronic obstructive pulmonary disease",
  "uid": "8cc07d8c-d3e9-578d-aa48-aa9a15d28789"
}