Medicine (RMH) - Research Publications
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ItemA randomised phase II trial to examine feasibility of standardised, early palliative (STEP) care for patients with advanced cancer and their families [ACTRN12617000534381]: a research protocol(BMC, 2019-03-14)BACKGROUND: Current international consensus is that 'early' referral to palliative care services improves cancer patient and family carer outcomes; however, in practice, these referrals are not routine. Uncertainty about the 'best time' to refer has been highlighted as contributing to care variation. Previous work has identified clear disease-specific transition points in the cancer illness which heralded subsequent poor prognosis (less than 6 months) and which, we contest, represent times when palliative care should be routinely introduced as a standardised approach, if not already in place, to maximise patient and carer benefit. This protocol details a trial that will test the feasibility of a novel standardised outpatient model of early palliative care [Standardised Early Palliative Care (STEP Care)] for advanced cancer patients and their family carers, with referrals occurring at the defined disease-specific evidence-based transition points.The aims of this study are to (1) determine the feasibility of conducting a definitive phase 3 randomised trial, which evaluates effectiveness of STEP Care (compared to usual best practice cancer care) for patients with advanced breast or prostate cancer or high grade glioma; (2) examine preliminary efficacy of STEP Care on patient/family caregiver outcomes, including quality of life, mood, symptoms, illness understanding and overall survival; (3) document the impact of STEP Care on quality of end-of-life care; and (4) evaluate the timing of palliative care introduction according to patients, families and health care professionals. METHODS: Phase 2, multicenter, open-label, parallel-arm, randomised controlled trial (RCT) of STEP Care plus standard best practice cancer care versus standard best practice cancer care alone. DISCUSSION: The research will test the feasibility of standardised palliative care introduction based on illness transitions and provide guidance on subsequent development of phase 3 studies of integration. This will directly address the current uncertainty about palliative care timing. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12617000534381.
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Item"I'm just waiting...": an exploration of the experience of living and dying with primary malignant glioma(SPRINGER, 2014-02)PURPOSE: Referral to supportive and palliative care services for people with high-grade primary malignant glioma (PMG) often occurs late in the illness course, despite significant care needs and overall poor prognosis. This study aimed to understand patient experience at the end of life and document supportive and palliative care needs. METHODS: A qualitative study was conducted involving ten PMG patients who were at different stages in the illness course including the end of life and had varying levels of physical and cognitive function. Consecutive, eligible patients attending neurosurgery, oncology, and palliative care services of two metropolitan hospitals were recruited. In-depth interviews explored supportive and palliative care needs across the disease trajectory. Interviews were analysed independently by three investigators consistent with a grounded theory approach, and emerging ideas were compared and refined to define key patient experiences. RESULTS: Despite the medical treatment and supportive care available, there remains a gap in services addressing complex existential and psychosocial needs that were markedly valued by patients. Patient experience was characterised by a pervasive loss of all that encompassed their former sense of self and a focus on immediate needs. CONCLUSIONS: Patients in this study had substantial needs, which were often not shared and not addressed by the current medical system of care. An improved multidisciplinary care model is indicated, which proactively (1) engages care coordination and advocacy; (2) minimises patients' sense of waiting and uncertainty through mapping out a plan, including involvement of palliative care in a timely fashion; and (3) actively invites discussion around goals and preferences for care to promote patients' sense of self.
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ItemClinical presentation and patterns of care for short-term survivors of malignant glioma(SPRINGER, 2014-09)Palliative care provision for patients with high-grade malignant glioma is often under-utilised. Difficulties in prognostication and inter-patient variability in survival may limit timely referral. This study sought to (1) describe the clinical presentation of short-term survivors of malignant glioma (survival time <120 days); (2) map their hospital utilisation, including palliative and supportive care service use, and place of death; (3) identify factors which may be important to serve as a prompt for palliative care referral. A retrospective cohort study of incident malignant glioma cases between 2003-2009 surviving <120 days in Victoria, Australia was undertaken (n = 482). Cases were stratified according to the patient's survival status (dead vs. alive) at the end of the diagnosis admission, and at 120 days from diagnosis. Palliative care was received by 78 % of patients who died during the diagnosis admission. Only 12 % of patients who survived the admission and then deteriorated rapidly dying in the following 120 days were referred to palliative care in their hospital admission, suggesting an important clinical subgroup that may miss out on being linked into palliative care services. The strongest predictor of death during the diagnosis admission was the presence of cognitive or behavioural symptoms, which may be an important prompt for early palliative care referral.
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ItemMapping the patterns of care, the receipt of palliative care and the site of death for patients with malignant glioma(SPRINGER, 2014-01)High-grade malignant glioma patients face a poor prognosis, preceded by rapid functional and neurobehavioural changes, making multidisciplinary care incorporating supportive and palliative care important. This study aimed to quantify the association between symptoms,receipt of supportive and palliative care and site of death. We undertook a retrospective cohort study between 2003 and 2009 of incident malignant glioma cases who survived for at least 120 days between their first hospitalisation and their death (n = 678) in Victoria, Australia, using linked hospital, emergency department and death data. The median age of patients was 62 years, 40% were female, and the median survival was 11 months. Twenty-six percent of patients died outside of hospital, 49% in a palliative care bed/hospice setting and 25% in an acute hospital bed. Patients having 1 or more symptoms were more than five times as likely to receive palliative care. Patients who receive palliative care are 1.7 times more likely to die outside of hospital. In conclusion malignant glioma patients with a high burden of symptoms are more likely to receive palliative care and, in turn, patients who receive palliative care are more likely to die at home.