Exploring the care needs of patients with advanced COPD: An overview of the literature

School of Nursing and Midwifery, The University of Sheffield, Sykes House, Sheffield, UK.
Respiratory medicine (Impact Factor: 3.09). 10/2009; 104(2):159-65. DOI: 10.1016/j.rmed.2009.09.007
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Chronic obstructive pulmonary disease (COPD) is a highly prevalent condition worldwide and is associated with significant mortality. This paper gives an overview of the relevant literature regarding care needs in advanced COPD from the perspective of the patient or carer, and aims to explore the appropriateness of a palliative care approach in this group. Publications revealed that patients with COPD have a high symptom burden that impacts on quality of life and social functioning. Information provision in COPD is often lacking and the implications of diagnosis and prognosis are not routinely discussed. The impact on families and carers is considerable, many patients have significant care requirements which can affect family relationships. Although patients with COPD have regular contact with health services, access to specialist services and palliative care is poor. This paper highlights the need for increased provision for palliative care in COPD, alongside dedicated education and training for health professionals, and continued research to identify the most appropriate ways of delivering this care.

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    • "Patients in our survey expressed similar concerns about their future health, as well as fears of premature death arising from COPD, especially as a result of an exacerbation. Palliative care is an important component in the treatment of COPD patients, particularly those with severe disease [25], but access remains poor [26]. Current guidelines recommend that clinicians initiate discussions about end-of-life care with appropriate patients [4,27]. "
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    ABSTRACT: Although chronic obstructive pulmonary disease (COPD) is a major global health burden there is a lack of patient awareness of disease severity, particularly in relation to exacerbations. We conducted a global patient survey using an innovative, internet-based methodology to gain insight into patient perceptions of COPD and exacerbations in a real-world sample typical of today's working-age COPD population. Two thousand patients with COPD (53%), chronic bronchitis (52%) and/or emphysema (22%) from 14 countries completed an online questionnaire developed by the authors. The Medical Research Council (MRC) breathlessness scale was used to delineate symptom severity. Over three quarters of patients (77%) had experienced an exacerbation, with 27% of MRC 1 and 2 patients and 52% of MRC 3, 4 and 5 patients requiring hospitalization as a result of an exacerbation. While a majority of MRC 1 and 2 patients (51%) reported being back to normal within a few days of an exacerbation, 23% of MRC 3, 4 and 5 patients took several weeks to return to normal and 6% never fully recovered. A high proportion of patients (39%) took a 'wait and see' approach to exacerbations.Despite the high prevalence of exacerbations and their negative impact on quality of life, 73% of MRC 1 and 2 patients and 64% of MRC 3, 4 and 5 patients felt that they had control of their COPD. However, 77% of all patients were worried about their long-term health, and 38% of MRC 1 and 2 patients and 59% of MRC 3, 4 and 5 patients feared premature death due to COPD. To reduce the adverse effects of COPD on patients' quality of life and address their fears for the future, we need better patient education and improved prevention and treatment of exacerbations.
    BMC Pulmonary Medicine 08/2013; 13(1):54. DOI:10.1186/1471-2466-13-54 · 2.40 Impact Factor
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    • "It is no surprise that the patients identified breathlessness as the most important symptom of an exacerbation and the main reason for calling a doctor. Previous studies have reported breathlessness to be the greatest problem experienced by patients with COPD – both in daily life and during an acute exacerbation (Barnett 2005, Andenaes et al. 2006, Gardiner et al. 2010, Gysels & Higginson 2010). This study showed individual variations in the narratives of patients who have experienced breathing problems. "
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    ABSTRACT: To explore patient perceptions of chronic obstructive pulmonary disease exacerbation and the patients' experiences of their relations with health personnel during care and treatment. Patients suffering from acute exacerbation of chronic obstructive pulmonary disease often experience life-threatening situations and undergo non-invasive positive-pressure ventilation via bi-level positive airway pressure in a hospital setting. Theory on trust, which often overlaps with the issue of power, can shed light on patient's experiences during an acute exacerbation. Narrative research design was chosen. Ten in-depth qualitative interviews (n = 10) were conducted with patients who had been admitted to two intensive care units in Western Norway during the autumn of 2009 and the spring of 2010. Narrative analysis and theories on trust and power were used to analyse the interviews. Because of their breathlessness, the patients perceived that they were completely dependent on others during the acute phase. Some stated that they had experienced an altered perception of reality and had not understood how serious their situation was. Although the patients trusted the health personnel in helping them breathe, they also told stories about care deficiencies and situations in which they felt neglected. This study shows that patients with an acute exacerbation of chronic obstructive pulmonary disease often feel wholly dependent on health personnel during the exacerbation and, as a result, experience extreme vulnerability. The findings give nurses insight into building trust and a good relationship between patient and caregiver during an acute exacerbation of chronic obstructive lung disease.
    Journal of Clinical Nursing 07/2013; 22(21-22). DOI:10.1111/jocn.12033 · 1.26 Impact Factor
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    • "Our findings, however, show that people with COPD are less likely than those with other chronic life-limiting diseases to receive generalist treatment with a palliative or comfort intent. There is evidence that COPD patients experience similar palliative care needs in their last months of life to patients with other chronic life-limiting diseases such as cancer [19] [21]; we found high frequencies of pain, feelings of drowsiness and sadness and even higher frequencies of nervousness and difficulties breathing in the last week of life, which suggests referral to a palliative care service or at least changing treatment to include palliative or comfort intents may be of benefit to them [7] [14] [44] [45]. Another important finding, applicable to all disease groups but perhaps most particularly so for COPD patients, is that palliative care is still seen mainly as terminal care. "
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    ABSTRACT: To describe how patients with COPD, heart failure, dementia and cancer differ in frequency and timing of referral to palliative care services. We performed a population-based study with the Sentinel Network of General Practitioners in Belgium. Of 2405 registered deaths respectively 5%, 4% and 28% were identified as from COPD, heart failure or cancer and 14% were diagnosed with severe dementia. GPs reported use and timing of palliative care services and treatment goals in the final three months of life. Patients with COPD (20%) were less likely than those with heart failure (34%), severe dementia (37%) or cancer (60%) to be referred to palliative care services (p < 0.001). The median days between referral and death was respectively 10, 12, 14 and 20. Patients with COPD who were not referred more often received treatment with a curative or life-prolonging goal and less often with a palliative or comfort goal than did the other patients who were not referred. Patients with COPD are underserved in terms of palliative care compared to those with other chronic life-limiting diseases. Awareness of palliative care as an option for patients with COPD needs to increase in palliative care services, physicians and the general public.
    Respiratory medicine 06/2013; 107(11). DOI:10.1016/j.rmed.2013.06.003 · 3.09 Impact Factor
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