Optimising management and care delivery in people living with chronic obstructive pulmonary disease

University of Technology Sydney. Faculty of Health.BACKGROUND Chronic obstructive pulmonary disease (COPD) is a substantial health problem both within Australia and internationally, and is noted by the World Health Organization Global Burden of Disease: Update to be one of the most common, burdensome and widespread chronic conditions internationally. It is estimated that 210 million people worldwide have COPD with 80 million in the chronic progressive phase of the disease. Moreover, it affects 10% of all people over 40. Issues of healthcare access, increasing health costs and the need for improved health outcomes drive the search for more effective and economically sustainable approaches to support patients with chronic illnesses, such as COPD. Despite treatment optimisation, individuals with chronic progressive COPD continue to experience high symptom burden and have limited access to supportive services. Additionally, current care approaches to care delivery are episodic and expensive and reach only a small proportion of the population. COPD remains a substantial problem with marked symptom burden and recognised barriers to care, yet solutions are less evident. An emerging body of data underscores the importance of collaborative and multifaceted approaches, and these approaches are currently a focus of clinicians and policy makers in hospital avoidance. Nurses play a prominent role in these approaches through planning and coordinating the complex care for individuals with COPD. Understanding the challenges to care delivery will inform health professionals and policy makers in the optimal care delivery approaches that provide sustained positive impact for individuals with COPD. OBJECTIVES This thesis presents a series of discrete yet interrelated studies that have sought to understand how best to optimise care delivery in COPD. Specifically, the thesis sought to: • understand the underlying factors that influence and challenge individuals’ experience of living with COPD and their ability to manage their condition and engage with health care services; • conceptualise how can we better address unmet needs and facilitate the transition from chronic to the end stage disease; and • conceptualise innovative, multifaceted and tailored approaches that optimise care delivery and healthcare utilisation while meeting the needs of the individual. METHODS This dissertation is presented as a series of discrete, interrelated studies. Several methodological approaches have been used in the development and theoretical design of the individual studies and have assisted in study design and interpretation of findings. The theoretical underpinning and methodological processes are discussed in each individual study chapter, and include: integrative review; metasynthesis of qualitative data; qualitative focus groups; quantitative self-report survey; and systematic overview of published evidence within the Cochrane Database of Systematic Reviews. The dissertation is organised in four sections: Section 1: Introduction and conceptual frameworks; Section 2: Understanding the barriers and facilitators to care delivery; and Section 3: Looking to innovative future approaches to COPD care and Section 4: Overall thesis discussion. FINDINGS Despite advances in management and optimisation of treatments, individuals living with COPD experience well-established and ongoing needs, which have not markedly improved over the past two decades. While the physical challenges associated with COPD are well recognised, existential determinants, such as social isolation, are additionally seen to have a high impact on the individuals and their ability to manage their condition. However, they are rarely acknowledged or addressed in planning care delivery. The measure of success and effectiveness of interventions remains strongly based on health related quality of life, health utilisation and mortality data. Consequently, these outcomes continue to inform and drive policy and practice development. In optimising care delivery and healthcare utilisation, it is important to also consider the impact of provider influence, socioeconomic status, cognition, and health literacy. Support for collaborative self-management has been recognised as a vital component for increasing continuity and quality of chronic illness care in the future. Regular access to this expert advice around symptom management, problem solving and coping techniques are necessary for patients to make self-management decisions with increased confidence. Nurses play a prominent role in facilitating and accessing such support through planning and coordinating the complex care for individuals with COPD. Understanding the challenges to care delivery will inform health professionals and policy makers in the optimal care delivery approaches that provide sustained positive impact for individuals with COPD. The transition from chronic to chronic progressive COPD is particularly difficult for individuals living with COPD. Challenges in prognostication and the limited recommendations provided for end-stage care in international COPD guidelines are likely contributors to the lack of palliative and supportive care delivery in individuals with COPD. Improving providers’ confidence in initiating end-of-life discussions, through training in approaches to end-of-life conversations and available services, would assist in the utilisation of advanced care planning and system interventions. In addition, collaboration between primary, secondary and, tertiary care should be strengthened to improve delivery of care across different parts of the health system and encourage the integration of active management with planning for the final stages of life. Comprehensive and multivariate systems approaches are necessary to address the complex needs experienced by individuals with COPD. Evidence for these interventions is challenged due to intrinsic heterogeneity in their components and delivery. Clear articulation and consensus on essential intervention components are required for high quality care delivery; using a pre-specified and standardised taxonomy may inform health providers and consumers in design and development of future interventions for COPD management. Finally, current care approaches are episodic, expensive, and reach only a small proportion of the population. The long-term tasks of self-management and overall burden of disease provide a compelling argument for accessible and convenient avenues for patients to obtain ongoing treatment and peer support. Communication tools are already a pervasive component of healthcare delivery and will increasingly influence future healthcare delivery in COPD and other chronic conditions. The new generation of empowered health consumers expect healthcare systems that accommodate their changing needs and preferences. Innovation in delivery approaches, such as those seen in asynchronous online health delivery platforms, may be an important adjunct to traditional forms of healthcare and address some of the limitations of traditional care delivery. Further research is required into the socioeconomic and physical benefits of such approaches particularly in those who have limited access to face to face health support. CONCLUSIONS There is clear documentation of the marked burden and barriers to COPD care, yet solutions are less evident. This thesis has sought to understand how we can optimise care delivery in COPD. Issues of healthcare access, increasing health costs and the need for improved health outcomes drive the search for more effective and economically sustainable approaches to support patients with chronic illnesses, such as COPD. Future COPD care must be delivered through multifaceted and comprehensive approaches that tailor care to the socio-psychological needs, and associated health literacy of the individual. Collaborative care between individuals and health providers, and strengthening of relationships between primary, secondary and tertiary care, are essential to assisting individuals in accessing resources and moving between different parts of the health system. The long-term tasks of self-management and overall burden of disease provide a compelling argument for accessible and convenient avenues to obtain ongoing treatment and peer support, such as those seen in asynchronous online health delivery platforms. It is hoped that in understanding the factors that influence individuals engagement with care delivery that the work in this thesis will inform new and innovative delivery approaches that help address the varied needs of individuals with COPD and that engage patients with health professionals and peers in supportive and collaborative relationships

Non-pharmacological management interventions for COPD: An overview of Cochrane systematic reviews

© 2013 The Cochrane Collaboration. Published by JohnWiley & Sons, Ltd. This is the protocol for a review and there is no abstract. The objectives are as follows: To a) summarise the evidence, b) identify gaps in the evidence base and c) describe elements of non-pharmacological, non-surgical and non-device interventions for the management of COPD using a standardised taxonomy for disease management adapted from the American Heart Association (Krumholz 2006)

Delivering a large cohort simulation - Beginning nursing students' experience: A pre-post survey

Background: The use of simulation has been growing rapidly within nursing programs, internationally. Simulation provides opportunity for beginning nursing students to rehearse patient care experiences and develop confidence in technical and non-technical nursing skills

The use of simulation as a novel experiential learning module in undergraduate science pathophysiology education

Teaching of pathophysiology concepts is a core feature in health professional programs, but it can be challenging in undergraduate medical/biomedical science education, which is often highly theoretical when delivered by lectures and pen-and-paper tutorials. Authentic case studies allow students to apply their theoretical knowledge but still require good imagination on the part of the students. Lecture content can be reinforced through practical learning experiences in clinical environments. In this study, we report a new approach using clinical simulation within a Human Pathophysiology course to enable undergraduate science students to see "pathophysiology in action" in a clinical setting. Students role played health professionals, and, in these roles, they were able to interact with each other and the manikin "patient," take a medical history, perform a physical examination and consider relevant treatments. Evaluation of students' experiences suggests that using clinical simulation to deliver case studies is more effective than traditional paper-based case studies by encouraging active learning and improving the understanding of physiological concepts. © 2016 The American Physiological Society

Insights from Australians with respiratory disease living in the community with experience of self-managing through an emergency department 'near miss' for breathlessness: A strengths-based qualitative study

© 2017 Article author(s). Objectives: Breathlessness 'crises' in people with chronic respiratory conditions are a common precipitant for emergency department (ED) presentations, many of which might be avoided through improved self-management and support. This study sought insights from people with experience of ED 'near misses' where they considered going to the ED but successfully self-managed instead. Design and methods: A qualitative approach was used with a phenomenological orientation. Participants: were eligible if they reported breathlessness on most days from a diagnosed respiratory condition and experience of ≥1 ED near miss. Recruitment was through respiratory support groups and pulmonary rehabilitation clinics. Semistructured interviews were conducted with each participant via telephone or face-to-face. Questions focused on ED-related decision-making, information finding, breathlessness management and support. This analysis used an integrative approach and independent coding by two researchers. Lazarus and Cohen's Transactional Model of Stress and Coping informed interpretive themes. Results: Interviews were conducted with 20 participants, 15 of whom had chronic obstructive pulmonary disease. Nineteen interviews were conducted via telephone. Analysis identified important factors in avoiding ED presentation to include perceived control over breathlessness, self-efficacy in coping with a crisis and desire not to be hospitalised. Effective coping strategies included: taking a project management approach that involved goal setting, monitoring and risk management; managing the affective dimension of breathlessness separately from the sensory perceptual and building three-way partnerships with primary care and respiratory services. Conclusions: In addition to teaching non-pharmacological and pharmacological management of breathlessness, interventions should aim to develop patients' generic self-management skills. Interventions to improve self-efficacy should ensure this is substantiated by transfer of skills and support, including knowledge about when ED presentation is necessary. Complementary initiatives are needed to improve coordinated, person-centred care. Future research should seek ways to break the cyclical relationship between affective and sensory-perceptual dimensions of breathlessness

Unmet needs of patients with chronic obstructive pulmonary disease (COPD): A qualitative study on patients and doctors

Background: Chronic Obstructive Pulmonary Disease (COPD) is a chronic disease with repeated exacerbations resulting in gradual debilitation. The quality of life has been shown to be poor in patients with COPD despite efforts to improve self-management. However, the evidence on the benefit of self-management in COPD is conflicting. Whether this could be due to other unmet needs of patients have not been investigated. Therefore, we aimed to explore unmet needs of patients from both patients and doctors managing COPD. Methods: We conducted a qualitative study with doctors and patients in Malaysia. We used convenience sampling to recruit patients until data saturation. Eighteen patients and eighteen doctors consented and were interviewed using a semi-structured interview guide. The interviews were audio-recorded, transcribed verbatim and checked by the interviewers. Data were analysed using a thematic approach. Results: The themes were similar for both the patients and doctors. Three main themes emerged: knowledge and awareness of COPD, psychosocial and physical impact of COPD and the utility of self-management. Knowledge about COPD was generally poor. Patients were not familiar with the term chronic obstructive pulmonary disease or COPD. The word ‘asthma’ was used synonymously with COPD by both patients and doctors. Most patients experienced difficulties in their psychosocial and physical functions such as breathlessness, fear and helplessness. Most patients were not confident in self-managing their illness and prefer a more passive role with doctors directing their care. Conclusions: In conclusion, our study showed that knowledge of COPD is generally poor. There was mislabelling of COPD as asthma by both patients and physicians. This could have resulted in the lack of understanding of treatment options, outcomes, and prognosis of COPD. The misconception that cough due to COPD was contagious, and breathlessness that resulted from COPD, had important physical and psychosocial impact, and could lead to social isolation. Most patients and physicians did not favour self-management approaches, suggesting innovations based on self-management may be of limited benefit

District nurse interaction in engaging with end-stage chronic obstructive pulmonary disease patients: a mixed methods study

Aims and objectives. To explore the role of district nurses in caring for people with end-stage chronic obstructive pulmonary disease living in metropolitan London. Background. People with chronic obstructive pulmonary disease experience high symptom burden in their final stages of life. While the majority of end-stage chronic obstructive pulmonary disease patients symptoms are markedly similar to any end-stage chronic illness, these patients have limited access to supportive community services, such as district nursing. District nurses have an established role in end-of-life care in the community, however, this care has mainly focused on patients with terminal malignancy. It is unclear why district nurses established skills in end-of-life care not are not applied to this high needs patient group. Methods. A mixed-method design incorporating face-to-face interviews and mailed survey was chosen to gain a coherent understanding of the perceptions of district nurses in metropolitan London. Forty-three district nurses participated in this mixed method study in 2008. Conclusions. District nurses were found to lack confidence in their own knowledge about, and in their ability to interact with end-stage chronic obstructive pulmonary disease patients. While district nurses did interact with these patients, this was limited to tasks unrelated to chronic obstructive pulmonary disease. Referrers appeared to misunderstand the district nurse role in end-stage care and therefore its application to the care of end-stage chronic obstructive pulmonary disease patient

Factors influencing self-management in chronic obstructive pulmonary disease: An integrative review

Background: Chronic obstructive pulmonary disease is a common, chronic and burdensome condition requiring the individual to engage in a range of self-management strategies. The capacity to engage in self-management is dependent on a range of internal (e.g. personal) and external (e.g. health service) factors. Objectives: This paper seeks to define self-management, identify the determinants which influence the individual's ability to cope and adjust to living with chronic obstructive pulmonary disease in the community, and identify implications for clinical practice and research. Design: Integrative review. Data sources: Medline, Embase, PubMed, CINAHL, Google Scholar. Review methods: Integrative review using prospective research questions. Papers were included in the review if they were published in peer reviewed journals and written in English between 2000 and 2010. Articles were accepted for inclusion if they discussed the determinants that influenced self-management of chronic obstructive pulmonary disease in the community. Confirmation of results and discussion themes was validated by specialists in chronic obstructive pulmonary disease and complex care. Findings: Self-management is less well characterised in chronic obstructive pulmonary disease compared with other chronic conditions. Functional limitation and the need to balance disease management with everyday life are the two key elements that patients face in managing their condition. Provider characteristics, socioeconomic status and health literacy are sparsely discussed yet are known to influence chronic obstructive pulmonary disease self-management. Conclusions: Chronic obstructive pulmonary disease self-management must be a key focus internationally as the disease incidence increases. Collaborative care is required between patients and health providers in order facilitate patients in confident management of their condition. © 2011 Elsevier Ltd

Non-pharmacological management interventions for chronic obstructive pulmonary disease: an overview of Cochrane Reviews

The protocol is out of date and does not meet the current methodological standards of Cochrane

Palliative and supportive care in COPD: research priorities to decrease suffering.

Chronic obstructive pulmonary disease (COPD) affects 80 million people worldwide, is the fourth most prevalent cause of death globally and accounts for 3.5% of total years lost due to disability. Despite the similarities with malignant disease, many individuals suffer unnecessarily and continue to have limited access to palliative and endof-life care