title: HELPing older people with very severe chronic obstructive pulmonary disease (HELP-COPD): mixed-method feasibility pilot randomised controlled trial of a novel intervention.
abstract: BACKGROUND
  Extending palliative care to those with advanced non-malignant disease is advocated, but the implications in specific conditions are poorly understood.
  
  
  OBJECTIVE
  We piloted a novel nurse-led intervention, HELPing older people with very severe chronic obstructive pulmonary disease (HELP-COPD), undertaken 4 weeks after discharge from hospital, which sought to identify and address the holistic care needs of people with severe COPD.
  
  
  METHODS
  This 6-month mixed-method feasibility pilot trial randomised (ratio 3:1) patients to HELP-COPD or usual care. We assessed the feasibility of using validated questionnaires as outcome measures and analysed the needs/actions recorded in the HELP-COPD records. Semi-structured interviews with a purposive sample of patients, carers and professionals explored the perceptions of HELP-COPD. Verbatim transcriptions and field notes were analysed using Normalisation Process Theory as a framework.
  
  
  RESULTS
  We randomised 32 patients (24 to HELP-COPD); 19 completed the study (death=3, ill-health=4, declined=6). The HELP-COPD record noted a mean of 1.6 actions/assessment, mostly provision of information or self-help actions: only five referrals were made. Most patients were positive about HELP-COPD, discussing their concerns and coping strategies in all domains, but the questionnaires were burdensome for some patients. Adaptation to their slowly progressive disability and a strong preference to rely on family support was reflected in limited acceptance of formal services. Professionals perceived HELP-COPD as addressing an important aspect of care, although timing overlapped with discharge planning.
  
  
  CONCLUSIONS
  The HELP-COPD intervention was well received by patients and the concept resonated with professionals, although delivery post discharge overlapped with existing services. Integration of brief holistic care assessments in the routine primary care management of COPD may be more appropriate.
authors.affiliation: Allergy and Respiratory Research Group, Centre for Population Health Sciences, The University of Edinburgh, Edinburgh, UK.
authors.forename: Susan
authors.initials: S
authors.lastname: Buckingham
authors.affiliation: Primary Palliative Care Research Group, Centre for Population Health Sciences, The University of Edinburgh, Edinburgh, UK.
authors.forename: Marilyn
authors.initials: M
authors.lastname: Kendall
authors.affiliation: Centre for Inflammation Research, Queen's Medical Research Institute, The University of Edinburgh, Edinburgh, UK.
authors.forename: Susie
authors.initials: S
authors.lastname: Ferguson
authors.affiliation: Centre for Inflammation Research, Queen's Medical Research Institute, The University of Edinburgh, Edinburgh, UK.
authors.forename: William
authors.initials: W
authors.lastname: MacNee
authors.affiliation: Allergy and Respiratory Research Group, Centre for Population Health Sciences, The University of Edinburgh, Edinburgh, UK.
authors.forename: Aziz
authors.initials: A
authors.lastname: Sheikh
authors.affiliation: Division of Health and Social Care Research, Department of Primary Care and Public Health Sciences, King's College London, London, UK.
authors.forename: Patrick
authors.initials: P
authors.lastname: White
authors.affiliation: Wellcome Trust Clinical Research Facility, The University of Edinburgh, Edinburgh, UK.
authors.forename: Allison
authors.initials: A
authors.lastname: Worth
authors.affiliation: Primary Palliative Care Research Group, Centre for Population Health Sciences, The University of Edinburgh, Edinburgh, UK.
authors.forename: Kirsty
authors.initials: K
authors.lastname: Boyd
authors.affiliation: Primary Palliative Care Research Group, Centre for Population Health Sciences, The University of Edinburgh, Edinburgh, UK.
authors.forename: Scott A
authors.initials: SA
authors.lastname: Murray
authors.affiliation: Allergy and Respiratory Research Group, Centre for Population Health Sciences, The University of Edinburgh, Edinburgh, UK.
authors.forename: Hilary
authors.initials: H
authors.lastname: Pinnock
mesh_terms: D000223:Adaptation, Psychological; D005240:Feasibility Studies; D006694:Holistic Health; D006801:Humans; D009730:Nursing Assessment; D010865:Pilot Projects; D029424:Pulmonary Disease, Chronic Obstructive / Q000523:psychology / Q000628:therapy*