Acceptability and Feasibility of Saliva-delivered PCR Coronavirus 2019 Tests for Young Children.

OBJECTIVES: Access to readily available, reliable, and easy-to-use coronavirus disease 2019 (COVID-19) tests remains critical, despite great vaccination progress. Universal back-to-school testing offered at early care and education ([ECE]; ie, preschool) sites to screen for positive cases may help preschoolers safely return to, and stay in, ECE. We examined the acceptability and feasibility of using a quantitative polymerase chain reaction COVID-19 saliva test for young children (n = 227, 54.0% girls: mean age = 52.3 ± 8.1 months) and their caregivers (n = 70 teachers: mean = 36.6 ± 14.7 years; n = 227 parents: mean = 35.5 ± 9.1 years) to mitigate the spread of COVID-19 and reduce days of school and work missed for households with children who test positive. METHODS: Participants were recruited at ECE sites serving low-income communities as part of the Rapid Acceleration of Diagnostic Testing-Underserved Populations Back to Early Care and Education Safely with Sustainability via Active Garden Education project (NCT05178290). RESULTS: Surveys in English or Spanish administered at testing events to children and caregivers at ECE sites showed child and adult acceptability and feasibility ratings were generally high. More favorable child and parent ratings were positively associated with child age and whether the child was able to produce a saliva sample. Language preference was not associated with any outcomes. CONCLUSIONS: Saliva sampling for COVID-19 at ECE sites is an acceptable strategy as an additional layer of protection for 4- and 5-year-olds; however, alternate testing strategies may be needed for younger children.

Exploring clinicians' decision-making processes about end-of-life care after burns: A qualitative interview study.

INTRODUCTION: Little is known about treatment decision-making experiences and how/why particular attitudes exist amongst specialist burn clinicians when faced with patients with potentially non-survivable burn injuries. This exploratory qualitative study aimed to understand clinicians' decision-making processes regarding end-of-life (EoL) care after a severe and potentially non-survivable burn injury. METHODS: Eleven clinicians experienced in EoL decision-making were interviewed via telephone or video conferencing in June-August 2021. A thematic analysis was undertaken using a framework approach. RESULTS: Decision-making about initiating EoL care was described as complex and multifactorial. On occasions when people presented with 'unsurvivable' injuries, decision-making was clear. Most clinicians used a multidisciplinary team approach to initiate EoL; variations existed on which professions were included in the decision-making process. Many clinicians reported using protocols or guidelines that could be personalised to each patient. The use of pathways/protocols might explain why clinicians did not report routine involvement of palliative care clinicians in EoL discussions. CONCLUSION: The process of EoL decision-making for a patient with a potentially non-survivable burn injury was layered, complex, and tailored. Processes and approaches varied, although most used protocols to guide EoL decisions. Despite the reported complexity of EoL decision-making, palliative care teams were rarely involved or consulted.

Baseline Sequencing Surveillance of Public Clinical Testing, Hospitals, and Community Wastewater Reveals Rapid Emergence of SARS-CoV-2 Omicron Variant of Concern in Arizona, USA.

The adaptive evolution of SARS-CoV-2 variants is driven by selection for increased viral fitness in transmissibility and immune evasion. Understanding the dynamics of how an emergent variant sweeps across populations can better inform public health response preparedness for future variants. Here, we investigated the state-level genomic epidemiology of SARS-CoV-2 through baseline genomic sequencing surveillance of 27,071 public testing specimens and 1,125 hospital inpatient specimens diagnosed between November 1, 2021, and January 31, 2022, in Arizona. We found that the Omicron variant rapidly displaced Delta variant in December 2021, leading to an "Omicron surge" of COVID-19 cases in early 2022. Wastewater sequencing surveillance of 370 samples supported the synchronous sweep of Omicron in the community. Hospital inpatient COVID-19 cases of Omicron variant presented to three major hospitals 10.51 days after its detection from public clinical testing. Nonsynonymous mutations in nsp3, nsp12, and nsp13 genes were significantly associated with Omicron hospital cases compared to community cases. To model SARS-CoV-2 transmissions across the state population, we developed a scalable sequence network methodology and showed that the Omicron variant spread through intracounty and intercounty transmissions. Finally, we demonstrated that the temporal emergence of Omicron BA.1 to become the dominant variant (17.02 days) was 2.3 times faster than the prior Delta variant (40.70 days) or subsequent Omicron sublineages BA.2 (39.65 days) and BA.5 (35.38 days). Our results demonstrate the uniquely rapid sweep of Omicron BA.1. These findings highlight how integrated public health surveillance can be used to enhance preparedness and response to future variants. IMPORTANCE SARS-CoV-2 continues to evolve new variants throughout the pandemic. However, the temporal dynamics of how SARS-CoV-2 variants emerge to become the dominant circulating variant is not precisely known. Genomic sequencing surveillance offers unique insights into how SARS-CoV-2 spreads in communities and the lead-up to hospital cases during a surge. Specifically, baseline sequencing surveillance through random selection of positive diagnostic specimens provides a representative outlook of the virus lineages circulating in a geographic region. Here, we investigated the emergence of the Omicron variant of concern in Arizona by leveraging baseline genomic sequence surveillance of public clinical testing, hospitals, and community wastewater. We tracked the spread and evolution of the Omicron variant as it first emerged in the general public, and its rapid shift in hospital admissions in the state health system. This study demonstrates the timescale of public health preparedness needed to respond to an antigenic shift in SARS-CoV-2.

Treatment Decisions in Patients With Potentially Nonsurvivable Burn Injury in Australia and New Zealand: A Registry-Based Study.

Whilst burn-related mortality is rare in high-income countries, there are unique features related to prognostication that make examination of decision-making practices important to explore. Compared to other kinds of trauma, burn patients (even those with nonsurvivable injuries) may be relatively stable after injury initially. Complications or patient comorbidity may make it clear later in the clinical trajectory that ongoing treatment is futile. Burn care clinicians are therefore required to make decisions regarding the withholding or withdrawal of treatment in patients with potentially nonsurvivable burn injury. There is yet to be a comprehensive investigation of treatment decision practices following burn injury in Australia and New Zealand. Data for patients admitted to specialist burn services between July 2009 and June 2020 were obtained from the Burns Registry of Australia and New Zealand. Patients were grouped according to treatment decision: palliative management, active treatment withdrawn, and active treatment until death. Predictors of treatment initiation and withholding or withdrawing treatment within 24 hours were assessed using multilevel mixed-effects logistic regression. Descriptive comparisons between treatment groups were made. Of the 32,186 patients meeting study inclusion criteria, 327 (1.0%) died prior to discharge. Fifty-six patients were treated initially with palliative intent and 227 patients had active treatment initiated and later withdrawn. Increasing age and burn size reduced the odds of having active treatment initiated. We demonstrate differences in demographic and injury severity characteristics as well as end of life decision-making timing between different treatment pathways pursued for patients who die in-hospital. Our next step into the decision-making process is to gain a greater understanding of the clinician's perspective (eg, through surveys and/or interviews).

The Impact of Health Professionals' Language on Patient Experience: A Case Study.

When people become patients, they become vulnerable to their healthcare system and healthcare clinicians. In this case study, we describe an example of patient distress caused by language overheard in the perioperative environment. Clinicians need to be mindful that the language we use may have a significant impact on patient experience, be it during direct conversation or from conversations overheard. This is an important component of patient-centered care.

Burn Care Specialists' Views Toward End-of-Life Decision-Making in Patients With Severe Burn Injury: Findings From an Online Survey in Australia and New Zealand.

Burn care clinicians are required to make critical decisions regarding the withholding and withdrawal of treatment in patients with severe and potentially non-survivable burn injuries. Little is known about how Australian and New Zealand burn care specialists approach decision-making for these patients. This study aimed to understand clinician beliefs, values, considerations, and difficulties regarding palliative and end-of-life (EoL) care discussions and decision-making following severe burn injury in Australian and New Zealand burn services. An online survey collected respondent and institutional demographic data as well as information about training and involvement in palliative care/EoL decision-making discussions from nurses, surgeons, and intensivists in Australian and New Zealand hospitals with specialist burn services. Twenty-nine burns nurses, 26 burns surgeons, and 15 intensivists completed the survey. Respondents were predominantly female (64%) and had a median of 15 years of experience in treating burn patients. All respondents received little training in EoL decision-making during their undergraduate education; intensivists reported receiving more on-the-job training. Specialist clinicians differed on who they felt should contribute to EoL discussions. Ninety percent of respondents reported injury severity as a key factor in their decision-making to withhold or withdraw treatment, but less than half reported considering age in their decision-making. Approximately two-thirds indicated a high probability of death or a poor predicted quality of life influenced their decision-making. The three cohorts of clinicians had similar views toward certain aspects of EoL decision-making. Qualitative research could provide detailed insights into the varying perspectives held by clinicians.

A Case Study of Pain Management at End-of-Life for a Patient on High-Dose Buprenorphine.

In Australia, high-dose sublingual buprenorphine and long-acting injectable buprenorphine are available. High-dose buprenorphine is used predominantly in the setting of opioid use disorder and has a role in chronic pain. Palliative care specialists are increasingly involved in pain management and end-of-life care for patients on these medications, yet there is a lack of education and training about high-dose buprenorphine for palliative care specialists. We describe our experience caring for John (fictional name), a gentleman with chronic pain and a new high-grade post-transplant lymphoproliferative disorder prescribed high-dose buprenorphine. We share the challenges and experience in caring for John as he deteriorated into the terminal phase and died of his illness. We include potential management options and the rationale for our decision to rotate John from high-dose sublingual buprenorphine to subcutaneous oxycodone. We conclude with practice implications and suggestions for improved patient care and clinician experience, including increased collaboration between palliative medicine, acute pain, and addiction medicine services, increased education and training for palliative care specialists about high-dose buprenorphine, and ultimately the development of consensus high-dose buprenorphine to oral morphine equivalence guidelines.

Desire to Die Statements in the Era of Voluntary Assisted Dying: An Audit of Patients Known to a Victorian Consultation-Liaison Palliative Care Service.

Objectives: In the new era of voluntary assisted dying (VAD) legislation in Australia, this study aimed to explore (1) underlying reasons for desire to die statements (DTDSs), (2) clinician responses to DTDSs and (3) whether DTDSs were a true request for VAD. Methods: Clinical audit using an existing prospectively collected quality assurance database, supplemented by electronic medical records. Patients known to a consultation-liaison palliative care service who expressed a DTDS between October 2019 and September 2020 were included. Results: Forty-one patients were included; 29 (71%) were male, 29 (71%) had a malignancy and 31 (76%) expressed a DTDS more than once. Uncontrolled psychological symptoms were present more often than physical (n = 30 vs 19 [73% vs 46%]), yet physical symptoms were addressed more frequently than psychological (80% vs 63% of the time). Based on available data, the VAD assessment process was commenced by 7 patients, and death by VAD occurred for 2 patients. Conclusions: In our study, DTDSs were complex, multi-layered requests that more commonly reflected psychological rather than physical suffering. Though VAD is now legally possible, a DTDS was not always synonymous with a request for VAD. Key to responding to these requests are high levels of clinician confidence and communication skills. Training in this area remains critical for the experience of both patients and clinicians.

Goals of Care Discussions Over the Course of a Patient's End of Life Admission: A Retrospective Study.

BACKGROUND: As deaths in hospitals increase, clear discussions regarding resuscitation status and treatment limitations, referred to as goals of care (GOC), are vital. GOC may need revision as disease and patient priorities change over time. There is limited data about who is involved in GOC discussions, and how this changes as patients deteriorate in hospital. AIMS: To review the timing and clinicians involved in GOC discussions for a cohort of patients who died in hospital. METHODS: Retrospective observational audit of 80 consecutive end of life admissions between March 11th and April 9th, 2019. RESULTS: Of 80 patients, 75 (93.6%) had GOC recorded during their admission, about half for ward-based non-burdensome symptom management or end-of-life care. GOC were revised in 68.0% of cases. Medical staff involved in initial versus final GOC discussions included home team junior doctor (54.7% versus 72.5%), home team consultant (37.3% versus 56.9%) and ICU doctor (16.0% versus 21.6%). For initial versus final GOC decisions, patients were involved in 34.7% versus 31.4%, and family in 53.3% versus 86.3%. Dying was documented for 92.0% of patients and this was documented to have been communicated to the family and patient in 98.6% and 19.5% of cases respectively. CONCLUSIONS: As patients deteriorated, family and senior clinician involvement in GOC discussions increased, but patient involvement did not. Junior doctors were most heavily involved in discussions. We advocate for further GOC training and modeling to enhance junior doctors' confidence and competence in conducting and involving patients and families in GOC conversations.

Introducing Voluntary Assisted Dying: Staff Perspectives in an Acute Hospital.

BACKGROUND: Voluntary assisted dying (VAD) was legalised in Victoria, Australia in June 2019. Physicians can now assist patients to end their lives by providing drugs for self-administration at their voluntary and competent request (or for physician administration in limited circumstances). This study investigates the opinions of clinicians on the implementation of the legislation in one Victorian hospital. METHODS: This exploratory survey study was conducted at a 600-bed acute hospital in Melbourne, Australia in Jan 2019. 382 clinicians completed one or more qualitative questions. Participants commented on VAD, potential workplace challenges and staff support required. Free-text responses were analysed using inductive content analysis. RESULTS: Six themes: (1) Polarised views; (2) Fear of conflict; (3) Emotional burden; (4) Vulnerable patients; (5) Organisational challenges; (6) Decision-making. There were diverse views including objections to VAD for religious or ethical reasons, and whole-hearted support based on a compassionate response to suffering and the right of patients to self-determination. Participants feared conflict between colleagues, families and patients, and aggression towards staff. Clinicians called for educational and psychological support. There was concern that vulnerable patients may be coerced to opt for VAD to lessen the burden on families or the health system. Clinicians feared workloads would increase with the introduction of VAD. Patient decision-making capacity in this context must be firmly established before proceeding, and thorough assessments for depression, and optimal symptom management must be implemented before VAD is approved. A dedicated VAD team was suggested to support staff and manage VAD patients. CONCLUSION: Participants expressed polarised opinions about VAD and showed considerable anxiety about its introduction. Additional education and support are required to ensure that clinicians understand details of the legislation and their professional and personal options. Tolerance and respect for alternative viewpoints must be advocated within the organisation and more broadly.

Support for and willingness to be involved in voluntary assisted dying: a multisite, cross-sectional survey study of clinicians in Victoria, Australia.

BACKGROUND: In the Australian state of Victoria, specialist doctors are central to the operation of voluntary assisted dying (VAD). However, a broad range of clinicians may be involved in the care of patients requesting or using VAD. AIMS: To describe levels of support for and willingness to be involved in VAD and consider factors associated with clinician support for the VAD legislation and physicians' willingness to provide VAD in practice. METHODS: A multisite, cross-sectional survey of clinicians in seven Victorian hospitals. All clinicians were invited to complete an online survey measuring demographic characteristics, awareness of and support for the VAD legislation, willingness to participate in VAD related activities and reasons for willingness or unwillingness to participate in VAD. RESULTS: Of 5690 who opened the survey, 5159 (90.1%) were included in the final sample and 73% (n = 3768) supported the VAD legislation. The strongest predictor of support for the VAD legislation was clinical role. Forty percent (n = 238) of medical specialists indicated they would be willing to participate in either the VAD consulting or coordinating role. Doctors did not differ in willingness between high impact (44%) and low impact specialty (41%); however, doctors specialising in palliative care or geriatric medicine were significantly less willing to participate (27%). CONCLUSION: Approximately 73% of surveyed staff supported Victoria's VAD legislation. However, only a minority of medical specialists reported willingness to participate in VAD, suggesting potential access issues for patients requesting VAD in accordance with the legal requirements in Victoria.

Silent suffering of the dying and their families: impact of COVID-19.

Death, grief and bereavement all look different in the current COVID-19 pandemic. Patients and families are suffering as a result of COVID-19 itself, and the measures required to contain it. As a result, health professionals need to be aware of potential for additional psychological distress, as well as the risk of prolonged grief disorder.

Barriers to care for women with breast cancer symptoms in rural Bangladesh.

Breast cancer survival rates in lower-income countries like Bangladesh are approximately 50%, versus over 80% in high income countries. Anecdotal reports suggest that, beyond economic and health system barriers, sociocultural factors may influence a woman's care-seeking behavior and resultant early stage diagnoses. To understand these barriers, we conducted 63 interviews (43 women with breast cancer symptoms and 20 men) in Khulna, Bangladesh. We identified socio-cultural barriers like neglect and indifference toward women, women's lack of power to use resources, and reduced support from family due to stigma. Interventions must address these barriers and improve the status of women in Bangladesh.

A conceptual model: Redesigning how we provide palliative care for patients with chronic obstructive pulmonary disease.

ABSTRACTBackground:Despite significant needs, patients with chronic obstructive pulmonary disease (COPD) make limited use of palliative care, in part because the current models of palliative care do not address their key concerns. OBJECTIVE: Our aim was to develop a tailored model of palliative care for patients with COPD and their family caregivers. METHOD: Based on information gathered within a program of studies (qualitative research exploring experiences, a cohort study examining service use), an expert advisory committee evaluated and integrated data, developed responses, formulated principles to inform care, and made recommendations for practice. The informing studies were conducted in two Australian states: Victoria and South Australia. RESULTS: A series of principles underpinning the model were developed, including that it must be: (1) focused on patient and caregiver; (2) equitable, enabling access to components of palliative care for a group with significant needs; (3) accessible; and (4) less resource-intensive than expansion of usual palliative care service delivery. The recommended conceptual model was to have the following features: (a) entry to palliative care occurs routinely triggered by clinical transitions in care; (b) care is embedded in routine ambulatory respiratory care, ensuring that it is regarded as "usual" care by patients and clinicians alike; (c) the tasks include screening for physical and psychological symptoms, social and community support, provision of information, and discussions around goals and preferences for care; and (d) transition to usual palliative care services is facilitated as the patient nears death. SIGNIFICANCE OF RESULTS: Our proposed innovative and conceptual model for provision of palliative care requires future formal testing using rigorous mixed-methods approaches to determine if theoretical propositions translate into effectiveness, feasibility, and benefits (including economic benefits). There is reason to consider adaptation of the model for the palliative care of patients with other nonmalignant conditions.

A proposed framework of supportive and palliative care for people with high-grade glioma.

Background: Patients with malignant high-grade glioma (HGG) have significant supportive and palliative care needs, yet few tailored guidelines exist to inform practice. This study sought to develop an HGG framework of supportive and palliative care informed by needs reported by patients, families, and health care professionals (HCPs). Methods: This study integrates a mixed-methods research program involving: (i) exploring experiences through systematic literature review and qualitative study (10 patients, 23 carers, and 36 HCPs); and (ii) an epidemiological cohort study (N = 1821) describing care of cases of HGG in Victoria, Australia using linked hospital datasets. Recommendations based on these studies were developed by a multidisciplinary advisory committee for a framework of supportive and palliative care based on the findings of (i) and (ii). Results: Key principles guiding framework development were that care: (i) aligns with patient/family caregiver needs according to illness transition points; (ii) involves continuous monitoring of patient/family caregiver needs; (iii) be proactive in response to anticipated concerns; (iv) includes routine bereavement support; and (v) involves appropriate partnership with patients/families. Framework components and resulting activities designed to address unmet needs were enacted at illness transition points and included coordination, repeated assessment, staged information provision according to the illness transition, proactive responses and referral systems, and specific regular inquiry of patients' and family caregivers' concerns. Conclusion: This evidence-based, collaborative framework of supportive and palliative care provides an approach for patients with HGG that is responsive, relevant, and sustainable. This conceptual framework requires evaluation in robust clinical trials.

Resuscitation fluid composition affects hepatic inflammation in a murine model of early sepsis.

BACKGROUND: Fluid resuscitation is a crucial therapy for sepsis, and the use of balanced fluids and/or isotonic albumin may improve patient survival. We have previously demonstrated that resuscitation with normal saline results in increased hepatic leukocyte recruitment in a murine model of sepsis. Given that clinical formulations of albumin are in saline, our objectives were to develop a novel balanced electrolyte solution specifically for sepsis and to determine if supplementing this solution with albumin would improve the inflammatory response in sepsis. METHODS: We developed two novel buffered electrolyte solutions that contain different concentrations of acetate and gluconate, named Seplyte L and Seplyte H, and administered these solutions with or without 5% albumin. Normal saline with or without albumin and Ringer's lactate served as controls. Sepsis was induced by cecal ligation and puncture (CLP), and the liver microvasculature was imaged in vivo at 6 h after CLP to quantify leukocyte recruitment. Hepatic cytokine expression and plasma cell-free DNA (cfDNA) concentrations were also measured. RESULTS: Septic mice receiving either Seplyte fluid showed significant reductions in hepatic post-sinusoidal leukocyte rolling and adhesion compared to normal saline. Hepatic cytokine concentrations varied in response to different concentrations of acetate and gluconate in the novel resuscitation fluids but were unaffected by albumin. All Seplyte fluids significantly increased hepatic TNF-α levels at 6 h compared to control fluids. However, Seplyte H exhibited a similar cytokine profile to the control fluids for all other cytokines, whereas mice given Seplyte L had significantly elevated IL-6, IL-10, KC (CXCL1), and MCP-1 (CCL2). Plasma cfDNA was generally increased during sepsis, but resuscitation fluid composition did not significantly affect cfDNA concentrations. CONCLUSIONS: Electrolyte concentrations and buffer constituents of resuscitation fluids can modulate hepatic cytokine production and leukocyte recruitment in septic mice, while the effects of albumin are modest during early sepsis. Therefore, crystalloid fluid choice should be an important consideration for resuscitation in sepsis, and the effects of fluid composition on inflammation in other organ systems should be studied to better understand the physiological impact of this vital sepsis therapy.

Improving the Transition to Palliative Care for Patients With Acute Leukemia: A Coordinated Care Approach.

BACKGROUND: Currently, there is little guidance available for documenting and executing the change in management goals in the context of incurable hematologic disease. OBJECTIVE: The aim of this study was to improve the transition to palliative care for patients with acute myeloid leukemia (AML) through the development and implementation of a coordinated care plan program. METHODS: Twenty-three patients with AML who were no longer being treated with curative intent from March 2011 through September 2012 had hematology supportive care plans developed. Patients (n = 7) completed post-care plan implementation questionnaires to determine their level of understanding in relation to the change in treatment intent. Staff completed pre- (n = 26) and post- (n = 19) care plan implementation questionnaires to determine the communication, challenges, and accessibility of changed management goals. RESULTS: Seventy-seven percent of patients understood palliative care to be the primary team managing their symptoms, with 75% of patients viewing symptom control as the main goal of treatment. Staff findings demonstrated a significant improvement in the communication of treatment goals (53% preimplementation vs 86% postimplementation). Early timing of referrals remains a significant issue. CONCLUSIONS: Implementing the individualized care plan program was associated with better communication and accessibility of documented palliative treatment goals for patients with AML. IMPLICATIONS FOR PRACTICE: This study establishes a model of care that addresses symptom and disease burden in end-stage AML and provides valuable insight into the patient and family understanding of treatment intent during this terminal phase.

Health care professionals' perspectives of living and dying with primary malignant glioma: Implications for a unique cancer trajectory.

OBJECTIVES: Health care professionals (HCPs) caring for people with primary malignant glioma (PMG) and their carers see many of the profound challenges facing this group, yet their perspectives are not documented. This study aimed to understand and document the unique perspective of HCPs in relation to the supportive and palliative care needs of patients with PMG and their carers, with a view to developing a model of care. METHODS: Qualitative study involving semi-structured focus groups and interviews with 35 medical, nursing and allied health staff actively engaged in providing care for this patient group. Purposive and theoretical sampling from two major metropolitan hospitals and one community palliative care service in Australia was utilised to seek perspectives from a variety of disciplines and health care settings. Thematic analysis was conducted by three independent researchers, using a constant comparative method influenced by grounded theory. RESULTS: Key themes relating to the needs of people with PMG which were apparent from the HCPs included: The difference in the illness course of glioma compared to other cancers; Limitations of current medical care; Challenges in balancing hope with reality of the illness; and Recommendations to improve care, including recognising the role of family and moving from a model where services are offered in response to demonstrated needs. Significance of the results: Current models of care based upon the classic cancer trajectory are unresponsive to the needs of people with PMG. Care may be enhanced by moving towards a proactive approach, extending the goals of care beyond medical needs and broadening the focus of care to include family needs.

Living longer with adult high-grade glioma: setting a research agenda for patients and their caregivers.

The long-term survival of patients with adult high-grade glioma (HGG) remains poor, but for those who do live longer functional status and neurocognitive ability may be influenced by residual or recurrent tumour, or treatment-related complications. The aim of this review was to examine the current literature regarding the quality of life and experience of patients living longer with adult HGG and their caregivers, with a view to understanding the burden of treatment on patient abilities and deficits over time. Medline, PsychINFO and CINAHL databases were searched for the core concept of HGG in combination with an aspect of quality of long-term survival. Key findings of the 12 included studies were identified and synthesised thematically. There is a paucity of dedicated studies which have investigated the experiences of this cohort. The strength of existing literature is limited by the systematic exclusion of the poorest functioning patients and the under-representation of caregiver perspectives. Discrepancies in how patients view their quality of life were highlighted, despite consistent findings of significant physical and functional impairment. This review confirmed the presence of important differences between patient and caregiver views regarding patient abilities following treatment. Caregiver burden was found to be high, due to multiple dynamic and relentless stressors. The true experience of patients living longer with adult HGG and their caregivers remains unclear, particularly for patients with poorer neurocognitive and functional outcomes. Further research is required to clarify and replicate findings, explore discrepancies between patient and caregiver views, and to specifically investigate how caregiver needs and experiences may evolve over time.

Clinical presentation and patterns of care for short-term survivors of malignant glioma.

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.