Abstract
BackgroundIt is important to understand the total burden of COPD and thereby be able to identify patients who need more intensive palliative care to avoid deteriorated quality of life. The aim of this study was to describe the psychosocial and demographic characteristics of a population with advanced COPD in a stable phase of the disease.MethodsThis study was cross-sectional based on a prospective observational cohort. The following questionnaires were administered: Chronic Respiratory Disease Questionnaire (CRQ), The COPD Assessment Test (CAT), The Hospital and Anxiety and Depression Scale (HADS), The Medical Research Council dyspnoea scale (MRC), and self-rate general health.ResultsWe included 242 patients with advanced COPD from a Danish pulmonary outpatient clinic. Their mean FEV1 was 38% (±12.7) and 19% were treated with long term oxygen. The mean CRQ domain score was CRQ-dyspnea 4.21 (±1.4), CRQ-Mastery 4.88 (±1.3), CRQ-Emotional 4.81 (±1.2), CRQ-Fatigue 3.93 (±1.3). The mean CAT-score was 18.4 (± 6.7), and 44% had a CAT score > 20. The mean score on the subscale for anxiety (HADS-A) and depression (HADS-D) was 5.07 (±3.9) and 5.77 (±3.9), respectively. Thirty percent self-rated their health as bad or very bad and 19.8% were current smokers.ConclusionsThis study describes the characteristics of a population with advanced COPD in a stable phase of their disease. Our results illustrate how the population although treated in an outpatient structure already focusing on palliative needs, still live with unmet palliative needs and impaired quality of life.
Highlights
It is important to understand the total burden of chronic obstructive pulmonary disease (COPD) and thereby be able to identify patients who need more intensive palliative care to avoid deteriorated quality of life
There is growing evidence that patients with advanced COPD are marked by a high symptom burden, impaired health related quality of life (HRQoL) and live their last years of life with unmet palliative needs [1,2,3,4,5]
In the past years we have developed and implemented a new Danish pulmonary outpatient structure named CAPTAIN with the aim of improving the basic palliative care offered to patients with advanced COPD [6]
Summary
It is important to understand the total burden of COPD and thereby be able to identify patients who need more intensive palliative care to avoid deteriorated quality of life. In Denmark, approximately 320,000 persons have COPD and 50,000 of these have advanced COPD (https://www.lunge.dk/lunger/viden-noegletal-om-lungesygdomme). In Denmark, 5500 persons die due to COPD each year, making the disease the third most frequent cause of death in Denmark, and the highest mortality rate of COPD in the EU (https://www.lunge.dk/lunger/ viden-noegletal-om-lungesygdomme). In the past years we have developed and implemented a new Danish pulmonary outpatient structure named CAPTAIN with the aim of improving the basic palliative care offered to patients with advanced COPD [6]. Our qualitative evaluations illustrated how this new outpatient structure made it possible to respond to the individual and fluctuating palliative needs of patients with advanced COPD, and how both patients and health care professionals experienced that the quality of care improved. CAPTAIN is currently considered standard care for all patients with advanced COPD affiliated to our outpatient clinics [6,7,8]
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