Alternative donor transplantation for severe aplastic anemia: a comparative study of the SAAWP EBMT.

ABSTRACT: Selecting the most suitable alternative donor becomes challenging in severe aplastic anemia (SAA) when a matched sibling donor (MSD) is unavailable. We compared outcomes in patients with SAA undergoing stem cell transplantation (SCT) from matched unrelated donors (MUD) (n = 1106), mismatched unrelated donors (MMUD) (n = 340), and haploidentical donors (Haplo) (n = 206) registered in the European Society for Blood and Marrow Transplantation database (2012-2021). For Haplo SCT, only those receiving posttransplant cyclophosphamide for graft-versus-host disease (GVHD) prophylaxis were included. Median age was 20 years, and the median time from diagnosis to transplantation 8.7 months. Compared with MUD, MMUD (hazard ratio [HR], 2.93; 95% confidence interval [CI], 1.52-5.6) and Haplo (HR, 5.15; 95% CI, 2.5-10.58) showed significantly higher risks of primary graft failure. MUD had lower rates of acute GVHD compared with MMUD and Haplo (grade 2-4: 13%, 22%, and 19%, respectively; P < .001; grade 3-4: 5%, 9%, and 7%, respectively; P = .028). The 3-year nonrelapse mortality rate was 14% for MUD, 19% for MMUD, and 27% for Haplo (P < .001), whereas overall survival and GVHD and relapse-free survival (GRFS) rates were 81% and 73% for MUD, 74% and 65% for MMUD, and 63% and 54% for Haplo, respectively (P < .001). In addition to donor type, multivariable analysis identified other factors associated with GRFS such as patient age, performance status, and interval between diagnosis and transplantation. For patients with SAA lacking an MSD, our findings support MUDs as the preferable alternative donor option. However, selecting between an MMUD and Haplo donor remains uncertain and requires further exploration.

Re-vaccination against SARS-CoV-2 in allogeneic HSCT patients: Repeated primary vaccine doses increase seroconversion rates.

Patients with haematological malignancies often exhibit reduced antibody responses to severe acute respiratory syndrome-related coronavirus vaccines, especially those who have undergone allogeneic haematopoietic stem cell transplantation (HSCT). Limited data exist on vaccine efficacy in this group. In a retrospective analysis of 75 post-HSCT patients, we assessed serologic responses to one to four doses of Pfizer-BioNTech (PB), AstraZeneca (AZ) or Moderna (MU) vaccines within 2 years post-transplant. Seroconversion rates were 50.7%, 78%, 79% and 83% after the first to fourth doses respectively. The median time from allograft to first re-vaccination was 145 days (range 79-700). Failure to respond to the first vaccine dose was linked to acute GVHD (p = 0.042) and rituximab treatment within 12 months (p = 0.019). A trend was observed with chronic GVHD and seroconversion failure after the second (p = 0.07) and third (p = 0.09) doses. Patients vaccinated before HSCT showed better antibody responses post-transplant (p = 0.019). Coronavirus disease 2019 incidence was 16%, with 17% hospitalized and one death (8%). Despite low initial seroconversion rates post-HSCT, antibody responses improved after the second dose. Early full re-vaccination and boosters post-HSCT are recommended to reduce mortality. Rituximab use and active GVHD were identified as risk factors, warranting further investigation.

Practice guideline: Preparation for CAR T-cell therapy in children and young adults with B-acute lymphoblastic leukaemia.

The objective of this guideline, prepared by the ALL subgroup of the Advanced Cell Therapy Sub-Committee of BSBMTCT (British Society of Blood and Marrow Transplantation), is to provide healthcare professionals with practical guidance on the preparation of children and young adults with B-acute lymphoblastic leukaemia from the point of referral to that of admission for CAR T-cell treatment. The Grading of Recommendations Assessment, Development and Evaluation (GRADE) nomenclature was used to evaluate the levels of evidence and to assess the strength of recommendations. The GRADE criteria can be found at http://www.gradeworkinggroup.org.

Real-world use of venetoclax in the treatment of paediatric and teenage/young adult haematological malignancies.

Early-phase trials of venetoclax in children and teenagers/young adults with leukaemia have yielded promising results, but there remains a paucity of real-world data. To address this, we report a cohort of 41 children treated with venetoclax for a range of haematological malignancies, demonstrating complete remission in 43.6%, with most achieving minimal residual disease (MRD) negativity. Venetoclax was particularly effective as a bridge to transplant, with bridging successful in 75% of patients. Patients with MRD <1% at initiation of venetoclax were more likely to achieve MRD negativity (81.8% vs. 34.5%, p = 0.007) and had improved overall survival (54.5% vs. 17.9%, p = 0.004).

Higher survival following transplantation with a mismatched unrelated donor with posttransplant cyclophosphamide-based graft-versus-host disease prophylaxis than with double unit umbilical cord blood in patients with acute myeloid leukemia in first complete remission: A study from the Acute Leukemia Working Party of the European Society for Blood and Marrow Transplantation.

The best donor option for acute myeloid leukemia (AML) patients lacking an HLA-matched donor has remained intensively debated. We herein report the results of a large retrospective registry study comparing hematopoietic cell transplantation (HCT) outcomes between double-unit umbilical cord blood transplantation (dCBT, n = 209) versus 9/10 HLA-matched unrelated donor (UD) with posttransplant cyclophosphamide (PTCy)-based graft-versus-host disease (GVHD) prophylaxis (UD 9/10, n = 270) in patients with AML in first complete remission (CR1). Inclusion criteria consisted of adult patient, AML in CR1 at transplantation, either peripheral blood stem cells (PBSC) from UD 9/10 with PTCy as GVHD prophylaxis or dCBT without PTCy, transplantation between 2013 and 2021, and no in vivo T-cell depletion. The 180-day cumulative incidence of grade II-IV acute GVHD was 29% in UD 9/10 versus 44% in dCBT recipients (p = .001). After adjustment for covariates, dCBT recipients had a higher non-relapse mortality (HR = 2.35, 95% CI: 1.23-4.48; p = .01), comparable relapse incidence (HR = 1.12, 95% CI: 0.67-1.86; p = .66), lower leukemia-free survival (HR = 1.5, 95% CI: 1.01-2.23; p = .047), and lower overall survival (HR = 1.66, 95% CI: 1.08-2.55; p = .02) compared with patients receiving UD 9/10 HCT. In summary, our results suggest that transplantation outcomes are better with UD 9/10 with PTCy-based GVHD prophylaxis than with dCBT for AML patients in CR1. These data might support the use of UD 9/10 with PTCy-based GVHD prophylaxis over dCBT in AML patients lacking an HLA-matched donor.

Impact of positron emission tomography - computed tomography status on progression-free survival for relapsed follicular lymphoma patients undergoing autologous stem cell transplantation.

The optimum management approach for patients with relapsed or refractory follicular lymphoma remains uncertain. Autologous stem cell transplantation (autoSCT) is considered a standard option in suitable, younger patients with relapsed follicular lymphoma. AutoSCT is associated with very durable remissions in a minority of subjects, but also with significant, well-established toxicities. Although positron emission tomography (PET) status prior to autoSCT is an established prognostic factor in diffuse large B-cell lymphoma and Hodgkin lymphoma, no data exist in follicular lymphoma. We describe survival outcomes according to pre-transplant PET status, classified by the Lugano criteria into complete metabolic remission (CMR) versus non-CMR, in 172 patients with relapsed or refractory follicular lymphoma within a national, multicenter, retrospective British Society of Blood and Marrow Transplantation and Cellular Therapy registry study. The median number of lines of therapy prior to SCT was three (range, 1-6). The median follow-up after SCT was 27 months (range, 3-70). The median progression-free survival for all patients after autoSCT was 28 months (interquartile range, 23- 36). There was no interaction between age at transplantation, sex, number of months since last relapse, Karnofsky performance status or comorbidity index and achieving CMR prior to autoSCT. Superior progression-free survival was observed in 115 (67%) patients obtaining CMR versus 57 (33%) non-CMR patients (3-year progression-free survival 50% vs. 22%, P=0.011) and by pre-SCT Deauville score (continuous variable 1-5, hazard ratio [HR]=1.32, P=0.049). PET status was independently associated with progression-free status (non-CMR HR=2.02, P=0.003), overall survival (non-CMR HR=3.08, P=0.010) and risk of relapse (non-CMR HR=1.64, P=0.046) after autoSCT by multivariable analysis. Our data suggest that pre- SCT PET status is of clear prognostic value and may help to improve the selection of patients for autoSCT.

Methods of Recruitment for Surgical and Perioperative Randomized Controlled Trials: A Rapid Review.

Due to the complex nature of surgical randomized controlled trials (RCTs), reaching target recruitment can be challenging. The primary objective was to report on characteristics of successful pilot surgical and perioperative RCTs and the methodological strategies implemented to optimize recruitment. The secondary objective was to provide recommendations for successful recruitment strategies for future surgical RCTs. Ovid MEDLINE, Ovid EMBASE, and Web of Science (via Ovid) databases were searched from 2012 to 2022. This review included surgical and perioperative pilot studies that met their recruitment targets. Study and recruitment characteristics were summarized, and potential relationships between study design and recruitment rate were assessed. Optimized recruitment strategies were extracted when reported. Of 4156 total articles identified, 255 underwent full-text screening, and 52 articles were included. Of the included pilot studies, 21% (n = 11) did not indicate a target sample size or recruitment rate. Recruitment methods were minimally reported in pilot studies for perioperative or surgical RCTs. Strategies to optimize recruitment included internal iterative evaluations of the recorded recruitment appointments and staged introduction of the study. Recruitment rate was not associated with invasiveness of intervention or burden of participation. Patient involvement is absent from current reports on methodological design and offers valuable opportunity to optimize recruitment. Recruitment strategies in perioperative and surgical RCTs can be optimized with iterative qualitative evaluation of the recruitment methods with input from the interdisciplinary research team.

Parent's preferences for unscheduled paediatric healthcare: A discrete choice experiment.

BACKGROUND: Unscheduled healthcare is a key component of healthcare delivery and makes up a significant proportion of healthcare access, with children being particularly high users of unscheduled healthcare. Understanding the relative importance of factors that influence this behaviour and decision-making is fundamental to ensuring the system is best designed to meet the needs of users and foster appropriate cost-effective usage of health system resources. OBJECTIVE: The aim of the study was to identify the parent's preferences for unscheduled healthcare for a common mild childhood illness. DESIGN: A discrete choice experiment (DCE) was developed to identify the preferences of parents accessing unscheduled healthcare for their children. SETTING AND PARTICIPANTS: Data were collected from parents in Ireland (N = 458) to elicit preferences across five attributes: timeliness, appointment type, healthcare professional attended, telephone guidance before attending and cost. RESULTS: Using a random parameters logit model, all attributes were statistically significant, cost (ß = -5.064, 95% confidence interval, CI [-5.60, -4.53]), same-day (ß = 1.386, 95% CI [1.19, 1.58]) or next-day access (ß = 0.857, 95% CI [0.73, 0.98]), coupled with care by their own general practitioner (ß = 0.748, 95% CI [0.61, 0.89]), identified as the strongest preferences of parents accessing unscheduled healthcare for their children. DISCUSSION: The results have implications for policy development and implementation initiatives that seek to improve unscheduled health services as understanding how parents use these services can maximise their effectiveness. PATIENT OR PUBLIC CONTRIBUTION: The development of the DCE included a qualitative research component to ensure that the content accurately reflected parents experiences when seeking healthcare. Before data collection, a pilot test was carried out with the target population to gather their views on the survey.

Exploring the psychological impact of contact tracing work on staff during the COVID-19 pandemic.

BACKGROUND: Contact tracing is a key control measure in the response to the COVID-19 pandemic. While quantitative research has been conducted on the psychological impact of the pandemic on other frontline healthcare workers, none has explored the impact on contact tracing staff. METHODS: A longitudinal study was conducted using two repeated measures with contact tracing staff employed in Ireland during the COVID-19 pandemic using two-tailed independent samples t tests and exploratory linear mixed models. RESULTS: The study sample included 137 contact tracers in March 2021 (T1) and 218 in September 2021 (T3). There was an increase from T1 to T3 in burnout related exhaustion (p < 0·001), post-traumatic stress disorder (PTSD) symptom scores (p < 0·001), mental distress (p < 0·01), perceived stress (p < 0·001) and tension and pressure (p < 0·001). In those aged 18-30, there was an increase in exhaustion related burnout (p < 0·01), PTSD symptoms (p < 0·05), and tension and pressure scores (p < 0·05). Additionally, participants with a background in healthcare showed an increase in PTSD symptom scores by T3 (p < 0·001), reaching mean scores equivalent to those of participants who did not have a background in healthcare. CONCLUSIONS: Contact tracing staff working during the COVID-19 pandemic experienced an increase in adverse psychological outcomes. These findings highlight a need for further research on psychological supports required by contact tracing staff with differing demographic profiles.

Outreach nurses critical for delivery of HIV care to women in western Victoria.

Women living with HIV in regional Victoria face barriers accessing care. We evaluated the care cascade and outreach nurse support required for women attending our service between 2005 and 2020. A total of 33 women attended; 97% (32/33) were on antiretroviral therapy; 67% (22/33) retained in care, 27% (9/33) transferred and 6% (2/33) lost to follow up. Of women retained in care, 95% (21/22) were on antiretroviral therapy and 91% (20/22) had virological suppression. A total of 91% (30/33) required outreach nurse care (median care episodes 100/woman; IQR 44-179) - most frequently (87%; 26/30) liaising with pharmacies and prescribers. Outreach nurses are critical in achieving UNAIDS targets for women in western Victoria.

Factors that affect GP referral of a child with intellectual disability for a mild illness: A discrete choice experiment.

BACKGROUND: General practitioners (GP) report multiple challenges when treating individuals with intellectual disabilities which may influence referral rates. The study aimed to establish factors that influence GP's decision-making when referring a child with intellectual disabilities to the emergency department. METHOD: Discrete choice experiments (DCEs) are increasingly used in health research to further understand complex decision making. A DCE was designed to assess the relative importance of factors that may influence a GP's (N = 157) decision to refer. RESULTS: A random parameters model indicated that perceived limited parental capacity to manage an illness was the most important factor in the decision to refer a child to the ED, followed by a repeat visit, a referral request from the parent, and a Friday afternoon appointment. CONCLUSION: Understanding the factors that influence referral is important for service improvement and to strengthen primary care provision for this population and their families.

Trends in autologous stem cell transplantation for newly diagnosed multiple myeloma: Changing demographics and outcomes in European Society for Blood and Marrow Transplantation centres from 1995 to 2019.

Multiple myeloma (MM) accounts for 10% of haematological malignancies. Overall survival (OS) has improved in recent years due to increased use of autologous stem cell transplantation (ASCT) in the treatment of newly diagnosed MM and the advent of novel agents, including proteasome inhibitors, immunomodulatory drugs and monoclonal antibodies. To assess trends in ASCT including patient selection, choice of induction regimen, depth of response and survival, we performed a retrospective analysis of all patients undergoing first ASCT for MM in European Society for Blood and Marrow Transplantation centres between 1995 and 2019. A total of 117 711 patients across 575 centres were included. The number of transplants performed increased sevenfold across the study period. The median age increased from 55 to 61 years, and the percentage of patients aged >65 years rose from 7% to 30%. Use of chemotherapy-based induction fell significantly, being largely replaced by bortezomib-based regimens. The two-year complete response rate increased from 22% to 42%. The five-year progression-free survival and OS rates increased from 28% to 31% and from 52% to 69%, respectively. Transplant mortality fell from 5.9% to 1.5%. Ongoing advances in MM treatment may challenge the future role of ASCT. However, at the current time, ASCT remains central to the MM treatment paradigm.

Unscheduled healthcare for children with intellectual disabilities: A systematic scoping review.

BACKGROUND: The provision of unscheduled healthcare for children with intellectual disability is less researched than that focused on hospital settings or for adult services. The aim of the scoping review was to map the evidence base in this area and identify areas for future study. METHOD: A five-stage scoping review framework was adopted. CINAHL, PubMed, SCOPUS, PsycINFO, Embase, ProQuest Dissertation & Theses and Google Scholar were searched. Studies published in English after 1/1/2000 were considered eligible for inclusion. RESULTS: A total of 3158 titles and abstracts were screened, 137 full-text articles were reviewed, and 25 papers met the inclusion criteria. Descriptive themes focused on inequities, needs and experiences of families', poor GP training, and limitations of existing evidence. CONCLUSION: Describing trends in healthcare utilisation by this population is valuable for monitoring quality of healthcare, however, addressing observed inequities will require approaches that recognise specific issues within the health system that result in inequities.

Cannabinoid polymorphisms interact with plasma endocannabinoid levels to predict fear extinction learning.

BACKGROUND: The endocannabinoid system is gaining increasing attention as a favorable target for improving posttraumatic stress disorder (PTSD) treatments. Exposure therapy is the gold-standard treatment for PTSD, and fear extinction learning is a key concept underlying successful exposure. METHODS: This study examined the role of genetic endocannabinoid polymorphisms in a fear extinction paradigm with PTSD compared to healthy participants (N = 220). Participants provided saliva for genotyping, completed a fear conditioning and extinction task, with blood samples taken before and after the task (n = 57). Skin conductance was the outcome and was analyzed using mixed models. RESULTS: Results for cannabinoid receptor type 1 polymorphisms suggested that minor alleles of rs2180619 and rs1049353 were associated with poorer extinction learning in PTSD participants. The minor allele of the fatty acid amide hydrolase (FAAH) polymorphism rs324420 was associated with worse extinction in PTSD participants. Subanalysis of healthy participants (n = 57) showed the FAAH rs324420 genotype effect was dependent on plasma arachidonoyl ethanolamide (AEA) level, but not oleoylethanolamide or 2-arachidonoyl glycerol. Specifically, higher but not lower AEA levels in conjunction with the minor allele of FAAH rs324420 were associated with better extinction learning. CONCLUSIONS: These findings provide translational evidence that cannabinoid receptor 1 and AEA are involved in extinction learning in humans. FAAH rs324420's effect on fear extinction is moderated by AEA plasma level in healthy controls. These findings imply that FAAH inhibitors may be effective for targeting anxiety in PTSD, but this effect needs to be explored further in clinical populations.

Stuff you think you can handle as a parent and stuff you can't'. Understanding parental health-seeking behaviour when accessing unscheduled care: A qualitative study.

BACKGROUND: Unscheduled health care constitutes a significant proportion of health-care utilization. Parental decision making when accessing unscheduled care for their children is multifaceted and must be better understood to inform policy and practice. DESIGN: Nineteen semi-structured interviews and one focus group (n = 4) with parents of children younger than twelve in Ireland were conducted. Participants had accessed unscheduled care for their children in the past. Data were thematically analysed. RESULTS: Parents accessed unscheduled care for their children after reaching capacity to manage the child's health themselves. This was informed by factors such as parental experience, perceived urgency and need for reassurance. Parents considered the necessity to access care and situated their health-seeking behaviour within a framework of 'appropriateness'. Where parents sought unscheduled care was largely determined by timely access, and inability to secure a general practitioner (GP) appointment often led parents to access other services. Parents expressed a need for more support in navigating unscheduled care options. CONCLUSIONS: Better resources to educate and support parents are required, and structural issues, such as accessibility to GPs, need to be addressed to enable parents to better navigate the unscheduled health system and manage their children's health. The discourse around 'appropriate' and 'inappropriate' access to health care has permeated parental decision making when accessing unscheduled health care for their children. What constitutes appropriate access should be examined, and a shift away from this framing of health-seeking behaviour may be warranted. PATIENT OR PUBLIC CONTRIBUTION: There was no explicit patient or public involvement. All authors hold experience as users of the health system.

The Effect of Self-Reported REM Behavior Disorder Symptomology on Intrusive Memories in Post-Traumatic Stress Disorder.

Background: PTSD is characterised by severe sleep disturbances, which is increasingly recognised to in many cases consist of similar symptomology to sleep disorders such as REM Behaviour Disorder (RBD). The present study aimed to investigate whether different aspects of sleep quality influence intrusive memory development and whether PTSD status moderates this relationship. Participants and Methods: 34 PTSD, 52 trauma-exposed (TE) and 42 non-trauma exposed (NTE) participants completed an emotional memory task, where they viewed 60 images (20 positive, 20 negative and 20 neutral) and, two days later, reported how many intrusive memories they had of each valence category. Participants also completed three measures of sleep quality: the Pittsburgh Sleep Quality Index, the REM Behaviour Disorder Screening Questionnaire and total hours slept before each session. Results: The PTSD group reported poorer sleep quality than both TE and NTE groups on all three measures, and significantly more negative intrusive memories than the NTE group. Mediation analyses revealed that self-reported RBD symptomology before the second session mediated the relationship between PTSD status and intrusive memories. Follow-up moderation analyses revealed that self-reported RBD symptomology before the second session was only a significant predictor of intrusion in the PTSD group, though with a small effect size. Conclusions: These findings suggest that RBD symptomology is an indicator of consolidation of intrusive memories in PTSD but not trauma-exposed or healthy participants, which supports the relevance of characterising RBD in PTSD.

The impact of the COVID-19 pandemic on child health and the provision of Care in Paediatric Emergency Departments: a qualitative study of frontline emergency care staff.

BACKGROUND: The COVID-19 pandemic and subsequent public health guidance to reduce the spread of the disease have wide-reaching implications for children's health and wellbeing. Furthermore, paediatric emergency departments (EDs) have rapidly adapted provision of care in response to the pandemic. This qualitative study utilized insight from multidisciplinary frontline staff to understand 1) the changes in paediatric emergency healthcare utilization during COVID-19 2) the experiences of working within the restructured health system. METHODS: Fifteen semi-structured interviews were conducted with frontline staff working in two paediatric EDs and two mixed adult and children EDs. Participants included emergency medicine clinicians (n = 5), nursing managerial staff (n = 6), social workers (n = 2) and nursing staff (n = 2). Thematic Analysis (TA) was applied to the data to identify key themes. RESULTS: The pandemic and public health restrictions have had an adverse impact on children's health and psychosocial wellbeing, compounded by difficulty in accessing primary and community services. The impact may have been more acute for children with disabilities and chronic health conditions and has raised child protection issues for vulnerable children. EDs have shown innovation and agility in the structural and operational changes they have implemented to continue to deliver care to children, however resource limitations and other challenges must be addressed to ensure high quality care delivery and protect the wellbeing of those tasked with delivering this care. CONCLUSIONS: The spread of COVID-19 and subsequent policies to address the pandemic has had wide-reaching implications for children's health and wellbeing. The interruption to health and social care services is manifesting in myriad ways in the ED, such as a rise in psychosocial presentations. As the pandemic continues to progress, policy makers and service providers must ensure the continued provision of essential health and social services, including targeted responses for those with existing conditions.

A systematic review exploring the impact of focal leader behaviours on health care team performance.

AIM: The aim of this study is to understand how the behaviour of focal leaders impacts health care team performance and effectiveness. BACKGROUND: Despite recent shifts towards more collectivistic leadership approaches, hierarchical structures that emphasize the role of an individual focal leader (i.e., the formal appointed leader) are still the norm in health care. Our understanding of the effect of focal leader behaviours on health care team performance remains unclear. EVALUATION: A systematic review was conducted. Five electronic databases were searched using key terms. One thousand forty-seven records were retrieved. Data extraction, quality appraisal and narrative synthesis were conducted in line with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. KEY ISSUES: Fifty papers met the criteria for inclusion, were reviewed and synthesized under the following categories: task-focused leadership, directive leadership, empowering leadership and relational focused leadership. CONCLUSIONS: Categories are discussed in relation to team performance outcomes, safety specific outcomes, individual-level outcomes and outcomes related to interpersonal dynamics. Emerging themes are explored to examine and reflect on how leadership is enacted in health care, to catalogue best practices and to cascade these leadership practices broadly. IMPLICATIONS FOR NURSING MANAGEMENT: Empowering and relational leadership styles were associated with positive outcomes for nursing team performance. This underscores the importance of training and encouraging nursing leaders to engage in more collaborative leadership behaviours.

Factors influencing general practitioners decisions to refer Paediatric patients to the emergency department: a systematic review and narrative synthesis.

BACKGROUND: Clinical guidelines are integral to a general practitioner's decision to refer a paediatric patient to emergency care. The influence of non-clinical factors must also be considered. This review explores the non-clinical factors that may influence general practitioners (GPs) when deciding whether or not to refer a paediatric patient to the Emergency Department (ED). METHODS: A systematic review of peer-reviewed literature published from August 1980 to July 2019 was conducted to explore the non-clinical factors that influence GPs' decision-making in referring paediatric patients to the emergency department. The results were synthesised using a narrative approach. RESULTS: Seven studies met the inclusion criteria. Non-clinical factors relating to patients, GPs and health systems influence GPs decision to refer children to the ED. GPs reported parents/ caregivers influence, including their perception of severity of child's illness, parent's request for onward referral and GPs' appraisal of parents' ability to cope. Socio-economic status, GPs' aversion to risk and system level factors such as access to diagnostics and specialist services also influenced referral decisions. CONCLUSIONS: A myriad of non-clinical factors influence GP referrals of children to the ED. Further research on the impact of non-clinical factors on clinical decision-making can help to elucidate patterns and trends of paediatric healthcare and identify areas for intervention to utilise resources efficiently and improve healthcare delivery.

International palliative care research priorities: A systematic review.

BACKGROUND: There has been increasing evidence and debate on palliative care research priorities and the international research agenda. To date, however, there is a lack of synthesis of this evidence, examining commonalities, differences, and gaps. To identify and synthesize literature on international palliative care research priorities originating from Western countries mapped to a quality assessment framework. METHODS: A systematic review of several academic and grey databases were searched from January 2008-June 2019 for studies eliciting research priorities in palliative care in English. Two researchers independently reviewed, critically appraised, and conducted data extraction and synthesis. RESULTS: The search yielded 10,235 articles (academic databases, n = 4108; grey literature, n = 6127), of which ten were included for appraisal and review. Priority areas were identified: service models; continuity of care; training and education; inequality; communication; living well and independently; and recognising family/carer needs and the importance of families. Methodological approaches and process of reporting varied. There was little representation of patient and caregiver driven agendas. The priorities were mapped to the Donabedian framework for assessing quality reflecting structure, process and outcomes and key priority areas. CONCLUSIONS: Limited evidence exists pertaining to research priorities across palliative care. Whilst a broad range of topics were elicited, approaches and samples varied questioning the credibility of findings. The voice of the care provider dominated, calling for more inclusive means to capture the patient and family voice. The findings of this study may serve as a template to understand the commonalities of research, identify gaps, and extend the palliative care research agenda.