Back to Page
Authors: Barbara Elżbieta Gonçalves, Joanne Lusher, Caroline Sime, Eileen Harkess-Murphy
Keywords: advanced COPD, palliative care, quality of life, psychosocial burden
Abstract: Background: Chronic obstructive pulmonary disease (COPD) affects 4% to 6% of the global population, being the 4th major reason for mortality. COPD is responsible for more deaths than any other non-malignant disease, being the UK's 5th reason for mortality (5.3%) and has an important influence on patients’ quality of life (QoL). The daily life of patients with advanced COPD may incorporate living with a high symptom burden, facing a life which is compromised by reduced physical and social activities, and hence reduced QoL. Anxiety and depression are common in COPD but often not recognized or left untreated. They are connected with poor health outcomes, higher hospital admission, lower QoL and premature death. To date, there is little evidence about which model is the most suited to reduce anxiety and depression and improve quality of life. Different models of palliative care are available for patients with advanced COPD. The UK has one of the highest ratios of 15 services (e.g., hospital units, palliative care teams, home care services) per million population. This multicentre, mixed-method study will explore the narratives of patients’ experience and investigate the factors influencing patient experience and satisfaction in palliative care. The study also aims to measure the quality of life, to investigate psychosocial aspects (such as burden, social isolation, distress, anxiety, and depression) and to identify predictive factors that affect patients’ quality of life, the psychological burden of patients with advanced COPD. Methodology: This study will use a mixed-methods approach with a convergent design that merges results from quantitative and qualitative data analyses. The quantitative part is a cross-sectional study, in which the focus in on an objective rate of quality of life using The McGill Quality of Life Questionnaire-Revised (McGill QoL-R) and anxiety and depression measured with Hospital Anxiety and Depression Scale (HADS). The qualitative part uses a phenomenological approach, with semi-structured interviews being conducted to explore the views of patients about their experiences in palliative care from a psychosocial perspective. To have a broader view on the problem of COPD patients in Scotland, participants are being recruited from two different models of care; secondary care and hospices. Currently, data collection is in process, and the study will recruit participants until the end of November 2019. Discussion: This study will provide valuable knowledge and will describe a range of factors that aid patients’ access to palliative care services, which result in outcomes that they perceive as helpful. It will make further comment on how to manage the system in order to overcome anxieties and enable patients to obtain the service that they expect. In the future, these findings may be implemented in opportunities and good practices in palliative care for patients with advanced COPD. It will also add to the scientific evidence for palliative care services and will contribute to enhancements in the quality of life, psychosocial burden, and quality of care.