INTRODUCTION Thirty thousand people die from chronic obstructive pulmonary disease (COPD) each year in the UK, almost as many as die from lung cancer, and with health and social care needs that may be at least as great. 1,2 Uncontrolled symptoms, including breathlessness, cough, fatigue, anorexia, anxiety, depression, and pain are widely experienced. 3 At least one-third of patients who die from COPD have had little contact with services in the year before their death. 3 Studies suggesting that advanced COPD patients have palliative care needs have been limited by being unrepresentative, or by being purely qualitative, or by relying on retrospective proxy accounts. 1–5 They have led to increasing calls for the palliative care of patients with advanced COPD. 6–9 Despite growing interest, palliative care needs in COPD have not been described, nor has their prevalence been measured prospectively. There is no reliable guidance for generalists or specialists on how COPD sufferers who may have palliative care needs should be identified or how such needs should be discussed. Added to this has been the uncertainty about prognosis in advanced COPD. There is no evidence to support the making of a prognosis of less than 2 years in individuals with advanced COPD, irrespective of respiratory disease severity. 10–12 According to the World Health Organization, palliative care is: ‘an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.’ 13 Palliative care and end-of-life care are terms that are often used interchangeably, but this can generate a confusion that conceals differences in needs and priorities. 14 In designing this study of palliative care needs, the definitions and approaches developed by Higginson et al for the conceptualisation of needs have been used. 15 The study has sought to identify patients in the care of UK GPs, who have advanced COPD and palliative care needs, and to define those needs. METHOD A cross-sectional interview study was conducted between January and October 2007 in people with advanced COPD, to determine the proportion of patients with palliative care needs and to describe their needs. Palliative care needs were defined as having: uncontrolled severe symptoms in COPD despite optimal treatment of the disease; information needs about the risk of death, about prognosis, and about the availability of treatment to control symptoms; and a need for choice about place and priorities of future treatment in the event of worsening disease. Subjects Eligible subjects were patients in the care of GPs, with a diagnosis of COPD and at least two of the following: forced expiratory volume in the first second (FEV1) <40% of predicted;16[AQ3: is this reference 16? where is reference 17 to be cited in the text?] hospital admission for COPD or acute exacerbation of COPD in the previous 12 months; long-term oxygen therapy (LTOT); cor pulmonale; use of oral steroids; and being housebound. Patients with advanced cancer, severe alcohol-related or mental health problems, or learning difficulties were excluded. Subjects had to have an FEV1 of less than 40% predicted according to locally validated prediction equations if their body mass index (BMI) was below 30 kg/m 2 , or an FEV1 less than 30% of expected with a BMI ≥30 kg/m 2 , or an FEV1/height 2 ≤0.3.17, 18 The threshold of FEV1 <40% was used because the majority of subjects were over 70 years, and prediction equations for spirometry values in this age group are less reliable. Setting The study took place in the London Boroughs of Lambeth and Southwark. Lambeth was the 19th most deprived of 354 boroughs in England and Wales, and Southwark was the 26th. 19 Patients were identified from GPs’ COPD and oxygen registers. Practices were recruited by a local GP and accepted secondment of a researcher to identify patients from the medical records, and to send letters to patients on their behalf. Development of measures A purpose-designed questionnaire of palliative care needs was devised in a qualitative pilot study with 20 patients. 20 The topic guide for the qualitative interview study was based on a review of the literature including a retrospective survey of 209 patients who died from COPD. 3 Patients were interviewed to identify their most pressing needs for health and social care with respect to symptoms, information, and choice about place of care. The interview data in the earlier qualitative study were analysed using the framework approach to explore, compare, and contrast key themes. 22 The final questionnaire reflecting patients’ needs was piloted in 10 patients. It is available online[AQ4: The url has been moved from here to the reference list as number 23 and renumbered from here; however the url given appears to be unavailable, so you will need to supply the correct one] . 23 The questionnaire content is summarised in Box 1, included the Medical Research Council (MRC) Dyspnoea Scale, pain questions from the Aberdeen, London and Leeds Pain Survey, the Eastern Co- operative Oncology Group (ECOG) performance status measure, questions on dignity drawing on the work of Chochinov et al . 23–26 Questions were mainly closed in style using Likert scales for graded responses, but open questions were used to expand responses or to record new issues. Additional measures included the Hospital Anxiety and Depression Scale (HADS), and the Clinical COPD Questionnaire. 27,28 Breathlessness has been described as the most important symptom in COPD. 3,4 To identify the most severely affected patients, a composite severe breathlessness variable was developed, amalgamating the five- point (‘not at all’ to ‘every day’) breathlessness frequency variable with the severity dimensions of ‘breathlessness unrelieved by treatment’, ‘breathlessness P White, senior lecturer; S White, research assistant; P Seed, lecturer in medical statistics, King’s College London, Department of General Practice and Primary Care. P Edmonds, consultant and honorary senior lecturer, King’s College London, Department of Palliative Care and Policy. G Marjolein, senior research fellow, King’s College London, Department of Palliative Care and Policy and Barcelona Centre for International Health Research (CRESIB), Hospital Clinic, University of Barcelona, Spain. [AQ1: Only one affiliation allowed per author]. J Moxham, professor of respiratory medicine, King’s College London, Division of Asthma and Allergy and Lung Biology. C Shipman, senior research fellow, King’s College London, Department of General Practice and Primary Care and Department of Palliative Care and Policy.[AQ2: please give qualifications for each author] Address for correspondence Patrick White, King’s College London, Department of General Practice and Primary Care, 5 Lambeth Walk, London, SE11 6SP. E-mail: patrick.white@kcl.ac.uk Submitted: 18 June 2009; Editor’s response: 8 February 2010; final acceptance: 7 September 2010. ©British Journal of General Practice This is the full-length article (published online dd month yyyy) of an abridged version published in print. Cite this article as: Br J Gen Pract 2011; DOI: 10.3399/bjgp10X>>>>>>>. How this fits in Increasing calls for better end-of-life care for patients with advanced chronic obstructive pulmonary disease (COPD) reflect the large numbers of people who die from the disease and their considerable unmet needs. Care of advanced COPD is complex, not least because prognosis is uncertain. This research has assessed the nature and prevalence of palliative care needs in patients with advanced COPD in primary care. Contrary to assumptions that have been made for this group of patients, few report end-of-life care needs, and in most the palliation of breathlessness is their main concern. Palliative care or end-of-life care in advanced chronic obstructive pulmonary disease A prospective community survey Patrick White, Suzanne White, Polly Edmonds, Marjolein Gysels, John Moxham, Paul Seed and Cathy Shipman Research Abstract Background Calls for better end-of-life care for advanced chronic obstructive pulmonary disease (COPD) reflect the large number who die from the disease and their considerable unmet needs. Aim To determine palliative care needs in advanced COPD. Design Cross-sectional interview study in patients’ homes using structured questionnaires generated from 44 south London general practices. Method One hundred and sixty-three (61% response) patients were interviewed, mean age 72 years, 50% female, with diagnosis of COPD and at least two of: forced expiratory volume in the first second (FEV1) <40% predicted, hospital admissions or acute severe exacerbations with COPD, long-term oxygen therapy, cor pulmonale, use of oral steroids, and being housebound. Patients with advanced cancer, severe alcohol-related or mental health problems, or learning difficulties, were excluded; 145 patients were included in the analysis. Results One hundred and twenty-eight (88%) participants reported shortness of breath most days/every day, 45% were housebound, 75% had a carer. Medical records indicated that participants were at least as severe as non- participants. Eighty-two (57%) had severe breathlessness; 134 (92%) said breathlessness was their most important problem; 31 (20%) were on suboptimal treatment; 42 (30%) who were severely affected had not been admitted to hospital in the previous 2 years; 86 of 102 who had been admitted would want admission again if unwell to the same extent. None expressed existential concerns and few discussed need in terms of end-of-life care, despite severe breathlessness and impairment. Conclusion Needs in advanced COPD were considerable, with many reporting severe intractable breathlessness. Palliation of breathlessness was a priority, but discussion of need was seldom in terms of ‘end-of-life care’. Keywords COPD; dyspnoea; epidemiology; palliative care; primary health care. British Journal of General Practice, June 2011 exxx exxx British Journal of General Practice, June 2011