Sir Peter MacCallum Department of Oncology - Theses
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ItemHow information technology improves the quality and efficiency of medical care and research( 2018)In 2007, the concept of rapid learning healthcare was proposed in the United States of America health system in a response to increasing healthcare costs. Its aim was to accelerate knowledge discovery through a systematic approach to integrating electronic medical records design with analysis infrastructure to rapidly and continuously assess health system performance. The delivery of healthcare is becoming increasingly performed and documented within the electronic domain, and large databases of healthcare-related information being created as a by-product. This has led to an unprecedented level of access to detailed and structured clinical data that could be used to accelerate research. In a rapid learning healthcare system, the high level of integration from electronic record to policy would ensure that each patient and each click of the mouse would drive innovation. The attraction of rapid learning was not to supplant the traditional clinical trial paradigm, but to augment its effectiveness with accelerated analysis of real-world outcomes. The rapid learning concept relied heavily on electronic medical records, administrative systems and disease registries as data sources to power analyses. Electronic health record penetrance in Australia has lagged that achieved in the USA, primarily because of financial assistance provided as part of the HITECH act in the USA. However, one exception is seen in oncology, where radiotherapy is exclusively prescribed electronically. Additionally, there has been a significant shift toward electronic chemotherapy prescribing due to the clinical risk associated with manual systems. Perhaps in oncology there is an opportunity to replicate the successes of data-driven health research achieved elsewhere. The objective of the work contained in this thesis is to develop practical methods to expand and discover the infrastructure required to implement rapid learning health care in the Australian oncology context. Ultimately, the aim is to increase the quality and efficiency of medical care and research by harnessing novel information technology (IT) methods. In addition to leveraging existing secondary databases for health services research and creating high impact linkages with state-level cancer registries, advanced IT methods could also be used to automate manual data extraction tasks in a timely and cost-effective fashion. The integration of these methods into routine clinical practice has enormous implications for tracking patient care quality, and accelerating research by utilising all data by-products of health care.
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ItemThe role of nature in cancer patients' experiences of health and recovery( 2017)This thesis explores the role of nature in cancer patients’ experiences of health and recovery. Using a 2-Phase mixed-method approach, the investigation aimed to generate new theoretical understanding about cancer patients’ use of nature and how they find nature engagement helpful or not when confronting cancer diagnosis. The project’s translational focus was to produce expert recommendations for nature-based care opportunities in oncology contexts based on patient-reported data. First, a systematic literature review and meta-synthesis was conducted to describe the existing qualitative research evidence base relating to nature experiences and nature-based interventions for cancer populations specifically. The aim was to describe current knowledge about the role of nature in cancer patients’ lives. From eleven eligible publications, seven inter-related core themes were identified as follows: connecting with what is valued; being elsewhere, seeing and feeling differently; exploration, inner and outer excursions; home and safe; symbolism, understanding and communicating differently; benefitting from old and new physical activities; and, enriching aesthetic experiences. Next, an in-depth investigation of cancer patients’ own experiences with nature used primary data to develop a new Grounded Theory describing the underlying and intrapsychic mechanisms of cancer patients’ phenomenal nature experiences. Based on qualitative data collected from semi-structured interviews with 20 cancer patients (9 female), the resulting theory model explores the unique role nature plays when diagnosed with cancer. It constitutes a core category and two inter-related themes, which explain a normalization process in which patients moved towards a state of 'new-normal' (Core Category). Nature functioned in this process as a support structure that repositioned patients and nurtured their inner and outer capacities to respond and connect more effectively (Theme A). Once enabled and comforted, participants could engage survival and reconstructive manoeuvres and explore the consequences of cancer in their present lives and possible futures (Theme B). A dynamic relationship was shown between moving away while, simultaneously, advancing towards the cancer reality in order for patients to incorporate their cancer experiences into a shifting normality. From a place of comfort and safety, patients felt supported to deal differently and more creatively with the threat and demands of cancer diagnosis, treatment, and outlook. The descriptively rich interview data provided further insights into patients’ own recommendations for nature engagement in the oncology context, which were extracted from the transcriptions using deductive content analysis and were consolidated into patient recommendations for nature-based care opportunities. These incorporated using nature for vital sensory stimulation and engagement, using nature for personal space and freedom to enable private and social exploration, using views of nature for distraction and comfort, and accessing nature for physical activity and movement. Three critical factors were determined to avoid adverse experiences: determining appropriate health-care expenditure and resourcing on nature-based interventions, selection of appropriate nature-based design materials, and exercising caution around demanding nature engagement and harsh weather conditions. A questionnaire survey study was conducted following an environmental intervention in an oncology waiting room to assess patient, visitor, and staff responses to design changes, which included the addition of artificial plant materials. Based on 143 returned survey questionnaires consisting of 73 cancer patients, 13 staff, 52 carers, and five ‘other’, it was found that the environmental intervention positively impacted patients, staff, and carers’ perceptions of the oncology waiting room environment. Patients, staff, and carers mostly accepted artificial plants as an alternative design solution to real plants. Comments included positive appraisals and occasional adverse reactions to artificial plants. No significant differences were found between patient, staff, and carer reactions. Insights gleaned from the initial, exploratory phase formed the basis for a second phase investigation comprising an international online Delphi study. The aim was to solicit knowledge from relevant experts drawn from a range of healthcare practitioners, management, designers, and researchers to determine feasible opportunities for, and barriers to, providing helpful nature engagement in oncology settings. Two hundred potential panellists were identified and sent an invitation to participate. Thirty-eight experts were recruited who represented 7 countries: Australia (19), USA (8), UK (3), New Zealand (2), Canada (2), Denmark (3), and Sweden (1). This study followed a structured, iterative feedback process that queried and synthesized expert opinion. Cancer patients’ own recommendations, extracted from phase 1, were used as a starting point for the Delphi panel to brainstorm and develop their own ideas about appropriate nature-based opportunities in oncology settings and the barriers to their provision. In total, 250 separate suggestions for opportunities and 205 suggestions for barriers were collected. Further analysis condensed these into 55 unique items (35 opportunities, 20 barriers). The Delphi panel’s list of recommendations included “Window views from clinical areas onto nature […]” as the highest rated opportunity, and “Building design and site constraints […]” as the highest rated barrier to providing nature-based supports for oncology care. Finally, a synthesis of findings from the overall investigation, which constitutes six publications, is provided to summarize and outline the salient findings and discern the study’s limitations in order to suggest pathways for future research. This synthesis produced a conceptual framework consolidating new theoretical understanding and empirical content from patient and expert-reported data about nature-based care opportunities in the oncology setting. The thesis findings provide evidence for multiple uses of nature as a supportive aid in the cancer care context. Concrete recommendations have resulted to guide the application of nature based concepts in future oncology setting design and may be considered when developing additional supportive care services. The findings may assist healthcare practitioners, designers, researchers, and patients themselves to creatively and practically participate in future oncology care practice and design.
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ItemExploring the nature and impact of taste dysfunction in people receiving chemotherapy( 2013)Self-reported ‘taste’ problems are common in people receiving chemotherapy and have implications for nutritional and psychosocial domains. Taste refers to the perception derived when chemical molecules stimulate taste receptor fields in the oral cavity whereas flavour perception involves at least three independent sensory systems including taste, smell and texture. Conflation of the terms taste and flavour contributes to clinician confusion and reduces the opportunity to develop effective strategies to address taste problems in cancer patients. The research reported in this thesis aimed to characterise the extent to which taste function and food hedonics contribute to the eating and drinking experience in people receiving chemotherapy and to investigate how this is managed in the clinical setting. There was a mixed methods approach to this program of research that was comprised of three separate studies, in two phases, designed to: Phase 1, qualitative 1. Describe current practice surrounding taste function and food hedonics in the clinical oncology setting (Study 1); 2. Understand the experience and consequences of altered taste function and food hedonics for people receiving chemotherapy (Study 2); and Phase 2, quantitative 3. Describe the patterns of altered taste function and food hedonics across the chemotherapy treatment trajectory (Study 3). In the Phase 1 studies, patient and clinician interviews were used to explore a) clinician practice regarding the management of taste problems and b) patient and carer descriptions, experiences and consequences of taste changes. This qualitative phase informed the quantitative phase of the research: a longitudinal study of 52 women receiving chemotherapy for breast cancer that assessed taste function, appetite and food liking six times from before chemotherapy to 2 months after chemotherapy and investigated whether changes in these outcomes were associated with dietary intake, nutritional status or social dining activity. Phase 1 findings demonstrated that ‘taste’ problems refer to a raft of issues related to the wider aspects of flavour including changes to the sense of smell or touch, or to problems with appetite or food liking. Clinicians have limited capacity to distinguish between these scenarios. These changes shaped what patients chose to eat, drink, cook and purchase, and influenced how they dined and how they felt. A need for new approaches to classifying and describing flavour problems was identified and a requirement for better quality information and evidence with which to guide patients was indicated. In Phase 2, patterns of taste and hedonic changes were characterised in an unprecedented fashion across the treatment trajectory. Findings from Phase 2 analyses showed taste function and food hedonics were adversely influenced with greatest change closest to chemotherapy administration, followed by a gradual return to baseline measures. Problems resolved by 2 months after completion of chemotherapy. Change from baseline in ability to correctly identify all tastants was significant early in the third chemotherapy cycle (difference = 18.2%; 95% CI = 2.7, 32.9; p = 0.02) and final chemotherapy cycle (difference = 19.6%; 95% CI = 3.0, 35.1; p = 0.02). Decreased liking of sweet food (chocolate) was observed in the early (d = 0.77; p = 0.002) and middle stages of the third chemotherapy cycle (d = 0.70; p = 0.003) and early in the final chemotherapy cycle (d = 0.89; p = 0.001). Appetite was significantly decreased from baseline early in both the third and final chemotherapy cycles (d = 1.02; p < 0.001 respectively). Associations were found between taste and hedonic changes and dietary intake, nutritional status and social dining. Change in ability to correctly identify tastants was associated with reduced energy intake (r = 0.32; p = 0.005) early in the third chemotherapy cycle. At this assessment point, decreased liking of a sweet food item was also associated with reduced energy intake (r = 0.35; p = 0.001). Appetite loss was associated with reduced energy (r = 0.35; p = 0.001) and protein intake (r = 0.36; p = 0.001) early in a chemotherapy cycle, decrease in BMI over the study period (r = 0.36; p = 0.001), and change in overall nutritional status as assessed by PG-SGA score (r = 0.18; p = 0.09). Early in the final chemotherapy cycle, small-sized but non-significant associations were seen between taste change and social dining episodes (r = 0.22, p = 0.09) and between appetite loss and social dining episodes (r = 0.18, p = 0.16). Clinicians are ill equipped to support patients who report taste problems due to an absence of assessment tools or classification symptoms to identify problems described colloquially as ‘taste’. An emerging taxonomy of taste arising from this research goes some way to address the need for a classification system linking patient language to specific sensory or hedonic disturbances. Research findings will be used to guide the development of more specific pre-chemotherapy education material for patients.