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