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Modifiable barriers to meeting care and support needs of patients with advanced chronic obstructive pulmonary disease (COPD) and their informal carers
  1. Caroline Moore1,
  2. Gail Ewing1,
  3. Carole Gardener1,
  4. Patrick White2,
  5. Peter Burge3,
  6. Ravi Mahadeva4,
  7. Sophie Howson5,
  8. Sara Booth1,
  9. Tom Ling3,
  10. Morag Farquhar1,
  11. on behalf of the Living with Breathlessness study team
  1. 1University of Cambridge, Cambridge, UK
  2. 2King’s College London, London, UK
  3. 3RAND Europe, Cambridge, UK
  4. 4Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK
  5. 5Cambridgeshire and Peterborough NHS Foundation Trust

Abstract

Introduction COPD is a progressive condition with high symptom burden. Advanced COPD management should relieve symptoms, optimise daily functioning and reduce carer burden. Our knowledge of clinician barriers and facilitators to meeting the needs of these patients and their informal carers is limited.

Aim To identify modifiable barriers to meeting care and support needs of patients with advanced COPD and their carers.

Methods Purposively-sampled clinicians nominated by a population-based cohort of patients with advanced COPD participating in the Living with Breathlessness Study, took part in Longitudinal qualitative interviews on barriers and facilitators to meeting needs, and analysed using a Framework approach. Identified barriers were reviewed and recommendations to overcome them presented to stakeholders via workshop and online survey methods.

Results Identification and assessment of patient need, and barriers and facilitators to doing so, were largely driven by organisational and medical agendas, rather than person-centred care models. There was little evidence of clinician engagement with patients’ informal carers. There was a mismatch between clinicians’ perceptions of changes in patient need during the 18-month study duration and those of patients and carers. Clinicians felt unprepared for end-of-life care discussions and found patient readiness for these conversations difficult to assess. Clinician-identified patient, organisational and professional facilitators included trust, time and accessibility.

Conclusion Actioning recommendations such as stopping focusing on the challenge of prognostication as a barrier to meeting need, changing targets to incentivise person-centred care and identifying and supporting carers could improve care and support of patients and carers living with advanced COPD.

  • This report is independent research supported by the National Institute for Health Research (Career Development Fellowship, CDF-2012-05-218). The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health.

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