Nursing - Theses
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ItemNo Preview AvailableA Longitudinal Feasibility Study Exploring Cancer-Related Cognitive Impairment in Patients with Newly Diagnosed Aggressive Lymphoma( 2022)Background Cancer-related cognitive impairment (CRCI) is a recognised adverse consequence of cancer and its treatment. Published evidence speaks to the challenges of prospective, longitudinal CRCI studies, and, to date, the feasibility of collecting data on cognition in this patient cohort has not been evaluated. This study assessed the feasibility of collecting longitudinal data on cognition in patients with newly diagnosed, aggressive lymphoma undergoing standard therapy with curative intent via self-report, neuropsychological assessment, peripheral markers of inflammation and neuroimaging. An exploration and description of patterns of cancer-related cognitive impairment over the course of treatment and recovery was also undertaken. Methods Eligible participants completed comprehensive assessments pre-chemotherapy, mid-chemotherapy, and six to eight weeks post-chemotherapy completion. Participants completed neuropsychological tests and self-report measures including cognitive and other patient-reported outcome measures. Full blood examination counts were used to calculate blood cell-based inflammatory markers at all three time points. Neuroimaging was undertaken in a subset of patients; 18F-FDG-PET/CT scans were undertaken at all three time points; MRI scans were undertaken pre-chemotherapy and six to eight weeks post-chemotherapy completion. Results 30 of 33 eligible participants (91%, 95% CI: 76%, 97%) were recruited over 10 months. The recruitment rate was 3 patients/month (95% CI: 2.0, 4.3 patients/month). Mean age was 57 years (SD=17 years) and 16/30 (53%) were male. The neuroimaging sub-study was optional; 11/30 participants (37%) were eligible to take part, and all agreed. Retention and compliance with all assessments was high at all time points. Only one patient was withdrawn from the study due to disease progression. On average, the study sample performed worse on neuropsychological tests compared with population norms and healthy controls pre-chemotherapy. Notable changes from pre-chemotherapy at follow-up were observed on some neuropsychological tests and self-report measures including improvements in verbal fluency as assessed by the Controlled Oral Word Association Test and verbal memory as assessed by the Hopkins Verbal Learning Test; deterioration in perceived cognitive impairment and abilities as assessed by the Functional Assessment of Cancer Therapy-Cognitive Function measure; improvements in emotional wellbeing as assessed by the Functional Assessment of Cancer Therapy-General measure; worsening of fatigue as assessed by the Functional Assessment of Chronic Illness Therapy-Fatigue measure; and improvements in anxious symptomatology as assessed by the Patient-Reported Outcome Measurement Information System Anxiety 7a measure. Most associations between a global deficit score calculated based on responses to neuropsychological tests and self-report measures were trivial. Most associations between perceived cognitive impairment and abilities, and other self-report measures were small- to large-sized. Conclusion Findings from this PhD demonstrate that it is feasible to longitudinally assess cognitive status and impairment in people with newly diagnosed aggressive lymphoma during their initial treatment and recovery. Compared with population norms and healthy controls, mean neuropsychological test scores pre-chemotherapy indicate cognitive impairments may precede treatment for aggressive lymphoma. Estimates of change in cognitive function based on neuropsychological tests provided evidence of improvement in verbal fluency and memory. Conversely, estimates of change in cognitive function based on self-report measures provided evidence of deterioration in perceived cognitive impairment and abilities. Most associations between objective tests and subjective measures were trivial. This PhD has generated knowledge to inform the development of future research to test efficacy of novel interventions to improve patient experiences and cognitive outcomes.
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ItemUnplanned Emergency Department Presentations by Cancer Patients Receiving Systemic Anti-Cancer Therapy( 2021)Background In Australia, emergency department presentations have been found to be common for people affected by cancer, and even more so for patients receiving systemic anti-cancer therapy. These presentations are associated with lengthy admissions, treatment dose reductions, and treatment delays. The emergency department often provides cancer patients with access to unscheduled medical care and to specialist cancer advice for symptoms they may experience. At a health system level, there has been an increasing number of people presenting to the emergency department, and subsequently, a need to reduce emergency department presentations in people who are not critically unwell. The need to deliver safe and high-quality care to mitigate unplanned emergency department presentations has received considerable attention in the international health care community. However, substantial work is needed to develop models of care to reduce emergency department presentations that may be potentially avoidable. The aim of this thesis is to understand why patients who receive systemic anti-cancer therapy make unplanned emergency department presentations. This understanding can support the development of robust evidence to inform future research and strengthen the development of models of care to support patients receiving systemic anti-cancer therapy. Methods This study used a convergent, mixed-methods research design, underpinned by Andersen’s behavioural model of health service use, to explore patterns of health service use and contextual, individual and health behaviours that influence cancer patients’ decisions to engage with health services. Study 1 was a retrospective cohort study of unplanned emergency department presentations that occurred within 28 days of receiving systemic anti-cancer therapy in the outpatient setting between December 2014 and November 2017. This study explored patterns of, and risk factors associated with, making an emergency department presentation to one large public tertiary hospital in Melbourne, Australia. Study 2 was a systematic review that explored methods reported in published literature investigating the incidence of unplanned emergency department presentations by patients receiving systemic anti-cancer therapy. Study 3 was an explanatory sequential mixed methods study that explored the contextual, individual and health behaviours that influenced the decision to engage with health services during systemic anti-cancer therapy. Thematic analysis of textual data was undertaken using template analysis. Participants in Study 3 were recruited from October 2016 to March 2017. Results Study 1 identified that 45% (n = 1,182) of cancer patients made a total of 2,310 emergency department presentations within 28 days of receiving systemic anti-cancer therapy in the outpatient setting. More than half (58%, n = 1,341) of the emergency department presentations resulted in patient admission for further care. Patients born outside of Australia and those diagnosed with head and neck, upper gastrointestinal, colorectal, lung, skin or breast cancer were identified as having a significantly increased risk of making an emergency department presentation. Study 2 comprised a total of 21 papers, and overall, the risk of bias was assessed as moderate. There was substantial clinical and methodological heterogeneity in the studies included in the systematic review, such as the population and study setting, the period for which the participants were observed, and in the reporting of participants who were lost to follow-up. In Study 3, 16 of 58 (28%) participants presented to the emergency department over the 6-month study period. Four overarching themes were generated from the 19 semi-structured interviews involving: 1) missed opportunities for preparation and support; 2) the importance of symptoms and need for care; 3) navigating the system and preference for care provider; and 4) enablers and barriers to accessing care. An additional two integrative themes were generated from the semi-structured interviews: 1) the unknown and unpredictable; and 2) individual health beliefs and behaviours. Integrated findings found that perceived need was a stronger driver of emergency department presentation than socio-demographics factors. Participants experienced a combination of enablers and barriers to accessing other sources of health care that may have influenced their need to present to the emergency department; these included that the availability of appointments with their general practitioner was a barrier, and the presence of social supports was an enabler. Based on findings from the literature review and this PhD, a new conceptual framework for emergency department use by patients receiving systemic anti-cancer therapy is offered. Conclusions The knowledge generated in this PhD contributes novel and important insight as to why patients receiving systemic anti-cancer therapy present to the emergency department. Studies have shown that some emergency department presentations are avoidable; the findings from this PhD can assist in developing new strategies to mitigate these avoidable presentations and can inform future healthcare policy, organisational planning, and clinical practice. This PhD has provided robust evidence for future research and the need for sophisticated research designs that reflect the complexity of cancer patients and the health care system.
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ItemUnderstanding nutrition-related symptoms, complications and health-related quality of life in patients with gastroenteropancreatic neuroendocrine tumours( 2020)Gastroenteropancreatic neuroendocrine tumours (GEP NET) can lead to complex symptoms and reduced health-related quality of life (HRQoL). The management of GEP-NETs is challenging. To date there has been development of clinical practice guidelines and consensus guidelines for GEP-NETs; however, the supportive care needs and optimal nutritional management of patients affected by GEP-NETs remains under-researched and evidence to guide clinical practice is lacking. These malignancies have the potential to significantly impact on patient morbidity, HRQoL and nutrition due to the tumour location, functional status (secretion of hormones), symptoms and treatment. A limited number of published cross-sectional studies have indicated the presence of nutritional issues among patients with a GEP NET, including malnutrition (in 14-25%) and the presence of vitamin (niacin and fat-soluble vitamin) deficiencies. There is mostly anecdotal evidence for dietary change among patients with a GEP NET, and few studies have explored this phenomenon and its impact on patients. The aim of this thesis was to comprehensively describe the nutritional complications of GEP NET, and to explore the nutritional knowledge and practices of health professionals managing patients with a NET, enabling the first summary of NET health professional practices in regard to nutrition. A prospective longitudinal mixed-methods study was undertaken to comprehensively explore the prevalence of nutritional complications in patients diagnosed with a GEP NET. Patients recruited to this study had reduced HRQoL, specifically social functioning; and the presence of anxiety, depression and financial toxicity was observed. Common symptoms, reported in 40-80% of participants, were fatigue, abdominal discomfort, pain, bloating, wind/gas and diarrhoea. Results of this study showed that malnutrition was prevalent in up to 29% of patients, as was weight loss (up to 51%), loss of muscle mass (up to 62%) and dietary change (up to 56%), and all nutritional complications remained so over the six-month study period. Patient interviews conducted during the study period demonstrated the negative impact of a GEP NET diagnosis on patient’s HRQoL, and that dietary change and food restriction was often initiated by patients in response to their symptom burden. Nutrition and dietary information/management was identified by patients as an un-met need. Results of an exploratory mixed-methods health professional study showed that only 38% of NET health professionals are routinely performing screening for nutrition-related complications. Nutrition advice and management was varied and inconsistent, with health professionals identifying a lack of NET-specific nutrition evidence and guidelines as barriers to their practice. Results of the studies reported in this thesis contribute evidence and knowledge towards the presence and severity of nutritional complications among patients with a GEP NET, which are often under-recognised and impact on patient HRQoL. Results also provide the first summary of NET health professional nutrition-related practices. Results highlight the importance of identifying nutritional complications in this unique patient group and provide key insights into the nutrition risk factors relevant to patients with a GEP NET. This thesis will contribute to the future development of NET-specific nutrition guidelines and establishment of a robust nutrition risk screening process for NETs.
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ItemThe experiences of pain for hospitalised children following Haematopoietic Stem Cell Transplantation( 2020)Haematopoietic Stem Cell Transplantation (HSCT) therapy offers the hope of a cure to children with cancer and other serious illnesses. Despite the intensity and toxicity of this treatment, we know little about the pain associated with the complications of HSCT therapy or how pain is managed for these children. The aim of this study was to examine the pain experiences in hospitalised children following HSCT. In this study, the influences of contextual factors on how pain was communicated, assessed and managed in real time within the HSCT unit environment have also been explored. This study utilised mixed methods of data collection conducted in three phases. Phase One was designed as a single site cross-sectional audit of 258 episodes of pain-related care provided to inpatients of the Children’s Cancer Centre (n=54) and paediatric HSCT unit (n=19). Phase Two and Phase Three were conducted as a qualitative case study. The Social Communication Model of Pain provided the conceptual framework for the case study. In Phase Two, ten parent caregivers participated in semi-structured interviews at approximately 30 and 90 days post-transplantation to prospectively assess the impact of pain on children during HSCT therapy. Phase Three consisted of observations of clinical care (n= 90 hours) provided to paediatric HSCT recipients (n=29) by their healthcare providers (n=10). Semi-structured interviews were also conducted with healthcare providers (n=14) to gain their perspectives on pain-related care following HSCT therapy. The cross-sectional audit revealed pain related to medical treatment for cancer was common (n = 146/258, 57%) and persistent. Children’s pain was not consistently recorded by healthcare providers (n = 75/146, 51%). When pain was documented, it was predominantly mild with a median pain intensity score of 1 on an 11-point scale (IQR 1,3). Opioids were the mainstay of pain management interventions (n = 63/112, 56%) along with adjuvant medications (n = 47/112, 42%). Non-pharmacological methods of managing pain were under-represented in this audit (n = 38/146, 26%). There was no statistically significant difference between the pain-related care provided to paediatric HSCT recipients and general oncology patients. Due to limitations in the documentation practices of healthcare providers, it was decided to apply a qualitative lens to investigate the phenomenon of pain in children following HSCT therapy. The findings of the qualitative case study revealed that paediatric HSCT recipients experienced multiple painful complications that occurred sequentially across the trajectory of recovery from HSCT therapy. Pain predominantly occurred as a result of complications of HSCT therapy and related to medical procedures. Children, parent caregivers and healthcare providers also described a distinct entity of psychological pain in paediatric HSCT recipients. Parental presence played a substantive role in mitigating the influence of the clinical environment on children’s painful experiences. Paediatric HSCT recipients needed to be highly motivated to express pain to healthcare providers and parent caregivers in the clinical environment, and their willingness to communicate pain was influenced by the physiological impact of HSCT therapy, their developmental capacity to express the complexity of HSCT related pain, their relationship with the healthcare provider and parent caregiver and a medical event associated with fear and uncertainty. The assessment of pain following transplantation by healthcare providers and parent caregivers was predominantly reliant on observation of children for behaviours indicative of pain rather than the application of validated pain assessment tools, or through the child’s self-report. Without formal measures of the pain experience, judgements regarding the severity of children’s pain were influenced by the high acuity of care post-transplantation and the emotional responses of healthcare providers and parent caregiver from bearing witness to children’s pain. Pain-related care was provided in an environment where healthcare providers worked diligently to relieve pain in children and decisions regarding pain management were shared with parent caregivers, and where appropriate, with children. Due to the severity of pain, opioids were often ineffective alone. However, the effectiveness of pain management was also hindered by misconceptions regarding the titration of opioid therapy and a lack of clinical guidelines for the sustained administration of opioid medications. Healthcare providers also expressed concerns that children were utilising analgesics for psychological gain whilst parent caregivers identified gaps in the provision of non-pharmacological interventions for the management of psychological and procedural pain. These findings provide previously unexplored knowledge regarding the experience and expression of pain in hospitalised children following HSCT therapy. Although there have been advances in paediatric HSCT therapy, children continue to experience persistent and severe pain that is often refractory to management, despite the best efforts of healthcare providers and parent caregivers. Overall, this study has demonstrated that the nature of pain for paediatric HSCT recipients is prolonged and multifaceted, with both physical and psychological contributors to the pain experience. Efforts need to be directed to support children to self-report on their pain experiences and it is recommended that validated methods of assessing pain by healthcare providers and parent caregivers be implemented into clinical practice. There is a pressing need for the creation of evidence-based supportive care guidelines for the management of pain post-transplantation to optimise children’s relief from pain.