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Purpose The aims of this systematic review were to (1) examine the prevalence, severity, manifestations, and clinical associations/risk factors of sleep disturbance in primary brain tumour (PBT) survivors and their caregivers; and (2) determine whether there are any sleep-focused interventons reported in the literature pertaining to people affected by PBT. Methods This systematic review was registered with the international register for systematic reviews (PROSPERO: CRD42022299332). PubMed, EMBASE, Scopus, PsychINFO, and CINAHL were electronically searched for relevant articles reporting sleep disturbance and/or interventions for managing sleep disturbance published between September 2015 and May 2022. The search strategy included terms focusing on sleep disturbance, primary brain tumours, caregivers of PBT survivors, and interventions. Two reviewers conducted the quality appraisal (JBI Critical Appraisal Tools) independently, with results compared upon completion. Results 34 manuscripts were eligible for inclusion. Sleep disturbance was highly prevalent in PBT survivors with associations between sleep disturbance and some treatments (e.g., surgical resection, radiotherapy, corticosteroid use), as well as other prevalent symptoms (e.g., fatigue, drowsiness, stress, pain). While the current review was unable to find any sleep-targeted interventions, preliminary evidence suggests physical activity may elicit beneficial change on subjectively reported sleep disturbance in PBT survivors. Only one manuscript that discussed caregivers sleep disturbance was identified. Conclusions Sleep disturbance is a prevalent symptom experienced by PBT survivors, yet there is a distinct lack of sleep-focused interventions in this population. This includes a need for future research to include caregivers, with only one study identified. Future research exploring interventions directly focused on the management of sleep disturbance in the context of PBT is warranted.

Purpose: The numbers of adolescent and young adult (AYA) survivors of childhood cancer are exponentially growing. To ensure suitable services are available to meet the needs of this growing populat...

Music therapy (MT) is a widely used non-pharmacological intervention in pediatric health care, an integral part of pediatric palliative care (PPC). Yet, there is a lack of evidence of efficacy, and best practices are not well established. The nature and extent of physiologic impacts of MT in PPC have not previously been reported. This study explores how MT contributes to psycho-physiological changes in children receiving palliative care. We used a convergent mixed-methods feasibility study with a pre–post design. MT sessions were delivered to children (0–18 years), who were registered with a statewide Pediatric Palliative Care Service. Pre–post measures of pain and heart rate were collected using validated and objective measures and analyzed using mixed-model analysis. Analysis of 36 MT sessions demonstrated a statistically significant reduction in pain scores and heart rate after MT sessions. Post measures of pain measured with Face, Legs, Activity, Cry, Consolability scale (FLACC scale) scores were −1.57 (95% confidence interval [CI] −2.31 to −0.83) and by Likert pain scale −2.03 (95% CI −2.79 to −1.27). Heart rate reduced by a mean of −7.6 beats per minute (95% CI −10.74 to −3.37). Five parents participated in semi-structured interviews. Following thematic analysis, two major themes emerged: (1) MT has a positive impact on physiological symptoms and (2) MT enhances the opportunity to experience joy. Results demonstrate the feasibility of study components and may inform future research design for a larger study. This research contributes to the limited evidence about non-pharmacological interventions enhancing the quality of life for children receiving PPC.

Background: Racism persists, underscoring the need to rapidly document the perspec­tives and experiences of Black, Indigenous and People of Color (BIPOC) groups as well as marginalized populations (eg, formerly incarcerated people) during pandemics.Objective: This methods paper offers a model for using Public Health Critical Race Praxis (PHCRP) and related critical meth­odologies (ie, feminist and decolonizing methods) to inform the conceptualization, methods, and dissemination of qualitative research undertaken in response to the evolving COVID-19 pandemic.Sample: Using purposive snowball sam­pling, we identified organizations involved with health equity and social justice advo­cacy among BIPOC and socially marginal­ized populations. Focus group participants (N=63) included community members, organizers, activists, and health workers.Design: We conducted topic-specific (eg, reproductive justice) and population-specific (eg, Asian and Pacific Islander) focus groups (N=16 focus groups) in rapid succes­sion using Zoom software.Methods: A self-reflexive, iterative praxis guided theorization, data collection and analysis. We obtained community input on study design, the semi-structured discussion guide, ethical considerations and dissemi­nation. Applying PHCRP, we assessed our assumptions iteratively. We transcribed each interview verbatim, de-identified the data, then used two distinct qualitative tech­niques to code and analyze them: thematic analysis to identify unifying concepts that recur across focus groups and narrative analysis to keep each participant’s story intact.Results: The praxis facilitated relationship-building with partners and supported the iterative assessment of assumptions. Logisti­cal constraints included difficulty ensuring the confidentiality of virtual discussions.Conclusions: These novel approaches provide an effective model for community-engaged qualitative research during a pandemic. Ethn Dis. 2022;32(3):243-256; doi:10.18865/ed.32.3.243

PURPOSE To codesign, develop, and evaluate a smartphone app that includes patient-reported measures of symptoms and real-time advice in children's cancer. METHODS The Oncology Hub is a comprehensive approach to symptom management that includes a suite of codesigned tools and resources including clinical algorithms to determine the level of concern, symptom management advice, and resources for families of children with cancer. The evaluation involved Think Aloud interviews with parent and adolescent patients to complete tasks in the app as well as a User Experience questionnaire (score range, 0-120) and qualitative feedback. The accuracy of algorithms was determined by repeated testing of inputs and outputs over 4 weeks. RESULTS Design and wireframes were iteratively refined through consultation with parents and adolescents confirming the final design. Beta testing evaluation was then completed by 25 participants including two adolescents. Across all participants, 84% of tasks were easy to navigate, and the Oncology Hub demonstrated high usability, usefulness, and acceptability with participants' scores ranging between 90 and 120 (mean = 112.2, standard deviation = 9.43). Qualitative feedback was positive. Testing of algorithms identified inconsistencies in understanding between clinical research and coding teams; refinements were made until the expected response notifications were returned with 100% accuracy. CONCLUSION Technology offers new ways to think about how clinicians and families communicate and share information to harness the best of community and hospital services. Understanding how information is exchanged using health apps, and how this affects clinical workflow is critical to successful implementation, and optimizing symptom assessment and management in children with cancer.

Purpose: Cancer remains the most common cause of disease-related death among young people and carries a significant burden. In the absence of prior state-based Australian epidemiological studies, t...

Background Brain tumours are the most common and fatal of all solid tumours for children and adolescents. The effects of the tumour and treatment (chemotherapy, radiation, and/or surgery) results in significant disruptions to childhood development and large amounts of missed schooling. Among other challenges for families, this produces obstacles for children and adolescents to achieve and maintain academic performance and experience positive schooling encounters. Aims We thus aimed to systematically identify and synthesize qualitative evidence on how families experience paediatric brain tumour from diagnosis and beyond with regards to their schooling and education to identify gaps in service delivery, research, and policy. Methods A protocol for this review was registered with PROSPERO (ID: CRD42020177165). Searches were conducted in Medline, CINAHL, PsycInfo, Embase, and Web of Science, and yielded 22 eligible papers (representing 17 studies). Data were extracted into NVivo12 and analysed by qualitative description. Results We formed the following domain summaries: academic (perceived failure to keep up with peers and finding success where one could, the importance of encouragement for diagnosed children), social (the importance of friendships and the harm of bullying), and support (the defining factor in overall return-to-school experience, often not enough received from educational professionals and clinicians). Our review highlights the need for more comprehensive, individualized, and integrated support for diagnosed children to return to educational institutions, and for the need to address their social experiences, particularly with regards to bullying, potentially through a school-wide social and emotional learning approach. Conclusion Funding support, evidence-based guidelines, staff skill development, and clear communication structures across families, health care facilities, schools, and educational departments are essential to achieving this.

Background Variations in clinical practice contribute to negative outcomes for children with cancer. Research in this area is imperative to standardise practice, yet such research is challenging to undertake, and a significant proportion of studies fail. A common reason for failure is poor recruitment, yet little information is available to support researchers and clinicians planning such research. Methods Our primary aim was to describe the recruitment strategies and outcomes in a tertiary children’s hospital across multiple observational supportive care studies. Secondary aims were to establish principles to improve both recruitment strategies and the reporting of recruitment. We undertook a retrospective descriptive analysis of the recruitment logs and data from three studies in pediatric oncology. The mean time to recruit one participant was calculated. Common reasons for not approaching eligible participants and reasons potential participants declined are described. Results Of the 235 potential candidates across all studies, 186 (79%) were approached and of these 125 (67%) provided consent, with 117 (63%) completing baseline measures. We estimated recruitment per participant required an average 98 min of experienced research nurse time. Four factors are described that influence recruitment and six principles are outlined to maximise recruitment and the generalisability of research findings. Conclusions We highlight the recruitment experiences across three different projects in children’s cancer supportive care research and provide a roadmap for other researchers planning to undertake clinical research in pediatrics.

Objectives Brain tumors are the most common and fatal of all solid tumors for children and adolescents; those who survive live with long-term physical and emotional consequences, as do their families. We aimed to synthesize relevant qualitative evidence on families' experiences and psychosocial service needs across the lifespan to identify gaps in care delivery and research. Methods Searches were conducted in Medline, CINAHL, PsycInfo, Embase, and Web of Science. Identified papers were assessed with the Joanna Briggs Institute Critical Appraisal Tool. Data were extracted into NVivo12 and analyzed by qualitative description and, where appropriate, thematic analysis. Results The search yielded 628 papers, of which 40 (33 studies) were eligible (6%). Although the methodological quality of the papers was low, we identified concerns that were consistently reported over time and from different perspectives. Individual family members had varying psychosocial needs to be addressed within healthcare, schooling, and public policy. These include for survivor's mental health (particularly for body image), and to the disproportionate biopsychosocial burden faced by mother-caregivers. Conclusions Addressing the biological aspects of brain tumor cannot be our only focus. We have an obligation to provide services that meet the needs of families across diagnosis, treatment, survivorship, palliative care, and bereavement.

To develop and establish expert consensus on essential elements of optimal dietary and exercise referral practices for cancer survivors.A four-round modified, Delphi method (face-to-face and electronic). In round 1, initial statements were drafted based on Cancer Australia's Principles of Cancer Survivorship and input from key stakeholders through a cancer preconference workshop. In round 2, the initial statements were distributed to a panel (round 1 participants) to establish consensus by rating the importance of each statement using a five-point Likert scale. Statements that required significant changes in wording were redistributed to panel members in round 3 for voting. Round 4 was for consumers, requiring them to rate their level of agreement of final statements.In total, 82 stakeholders participated in round 1. Response rates for survey rounds 2 and 3 were 59% (n = 54) and 39% (n = 36). Panel members included nurses (22%), dietitians (19%), exercise professionals (16%), medical practitioners (8%), and consumers (4%). The mean "importance" rating for all essential elements was 4.28 or higher (i.e., fairly important, or very important). Round 4's consumer-only engagement received responses from 58 consumers. Overall, 24 elements reached consensus following some revised wording, including the development of three new statements based on panel feedback.Our developed essential elements of optimal dietary and exercise referral practices can help provide guidance to medical and nursing health professionals relevant to dietary and exercise referral practices. Future research should conduct an implementation intervention and evaluation of these essential elements to optimise dietary and exercise care in cancer survivors.

Ventricular tachycardia storm is associated with high mortality rates and is often refractory to treatment. Historically, few options for treatment have existed in cases when antiarrhythmic drugs fail. We report the case of a patient with incessant ventricular fibrillation (VF) in the postinfarction period that was triggered by premature ventricular contractions (PVCs) that persisted despite normal electrolytes, exclusion of ongoing ischemia, infusions of antiarrhythmic drugs, general anesthesia, full circulatory support with extracorporeal membranous oxygenation, and cardiac sympathetic denervation. Given that the VF appeared to be triggered consistently by a unifocal, short-coupled PVC (consistent with Purkinje fiber–mediated VF), we performed catheter ablation, after which point, the patient experienced no further PVCs or ventricular arrhythmia. This case serves as a reminder of three key teaching points. First, not all VF is created equal, with some cases being chiefly the result of a vulnerable substrate and others being best accounted for by frequent triggers. Second, examining the available electrocardiographic data and appropriately interpreting them can guide the selection of therapies up to and including catheter ablation for treatment-refractory VF. Third, full circulatory support greatly facilitates successful electroanatomic mapping and catheter ablation of unstable ventricular arrhythmias.

Background: Home-based cancer care offers new ways of delivering supportive therapies, including post-chemotherapy hydration, traditionally delivered in hospital settings. Understanding how programs are developed and how parents perceive managing care at home offers opportunities to improve services and experiences. Aim: To describe the implementation process and evaluation of a home intravenous hydration program for children with cancer and thus to provide practical information for future initiatives. Methods: Data were prospectively collected on clinical impact, safety indicators, and estimated costs; these were tabulated and analysed. Semi-structured interviews were undertaken with a subset of parents regarding their experience and analysed using content analysis. Results: Over 34 months, 21 children were eligible, and 16 parents were educated and assessed competent with providing home care. All 16 children received home hydration with a median of 5.5 days per child (IQR 6.65 days). This avoided 116 hospital bed-days and associated costs, at an estimated total value of USD $ 105,521, on average saving USD $ 910 per day and USD $ 6,596 per child. There were no adverse events reported, and no child required re-admission to hospital while receiving home hydration. Parents were overwhelmingly positive in their feedback about the program. Verbatim quotes were synthesized under one overarching theme—supporting normality promotes recovery. Conclusion: When adequately trained and well supported, parents highly value providing home-based care to their children. This offers opportunities to improve experiences and outcomes for children and families as well as reduce costs to health services, achieving clinical impact without reducing safety.

Background Use of Patient Reported Outcomes (PROs) to assess symptoms in children are not routinely used in clinical practice, yet children with complex conditions experience a significant number of symptoms. Aim To adapt and evaluate the Symptom Screening in Pediatrics Tool (SSPedi), a PRO measure developed in Canada for use with Australian children. Methods SSPedi wording was adapted and item relevance assessed by an expert clinical group (N = 7) resulting in the Australian version (SSPedi-Aus). Cognitive interviewing with children with cancer (N = 10, 8–18 years) established understanding and difficulty with completing. A second group of child-parent dyads (N = 30) were recruited to evaluate psychometric properties (content validity, test-retest reliability, and parent-proxy) measured with Intraclass Correlation Coefficients (ICC) with 95% Confidence Intervals (CI). Acceptability and usefulness of SSPedi-Aus were also assessed. Findings Construct validity was confirmed across all items by 30 children. Child test-retest achieved excellent concordance (ICC 0.98, 95% CI 0.91 to 0.99). Symptoms causing the most distress as reported by children were different to those identified by parents. Although children and parents returned a similar mean total score (13.43 vs. 13.80), there was weak overall interrater reliability (ICC 0.37, 95% CI −0.26 to 0.70, p = 0.12). Conclusion Children are distressed by symptoms that may not be identified by parents or reported to clinicians, yet these symptoms are amendable to intervention. The SSPedi-Aus is useful to assess the level of distress caused by symptoms in children.

Background: The availability and implementation of high-quality decision-making support are integral to ensuring the delivery of quality cancer care and subsequently achieving positive patient outcomes and experiences. Decision Support Systems (DSS) are increasingly used to support decision-making in clinical practice. However, it is not known beyond supporting the decision-making process whether DSS are indeed effective in improving outcomes for people affected by cancer. The purpose of this review was to identify and synthesize the available literature regarding the effects of DSS on patient-reported outcomes in cancer, both during and after cancer treatment.Methods: We conducted a systematic search of four databases for empirical literature published between 2000 and July 2021, in the English language, that reported an evaluation of patient-reported outcomes. Key information was extracted from each article including study design, type of cancer, intervention elements, type of DSS intervention, measures, and key outcomes. We appraised study quality using the Mixed Methods Appraisal Tool (MMAT).Results: We included 14 studies, which we categorized as symptom assessment interventions or interactive educational interventions. Studies described a range of health-related and process-related patient-reported outcomes, as well as decisional complexities. Findings were mixed regarding the effectiveness of clinical DSS interventions in improving total symptom distress and severity, whereas the majority were effective in reducing mean scores for worst and usual pain. Interventions were not effective in improving other health-related patient-reported outcomes including quality of life, global distress, depression, or self-efficacy and there were mixed effects for reducing decisional conflict. Regarding process-related patient-reported outcomes, there was moderate to high patient adherence to the intervention as well as generally high satisfaction and acceptability. However, there was minimal evidence for the effect of clinical DSS interventions in clinician adherence to intervention recommendations. Conclusions: Inconsistencies in reporting of interventions may be a contributing factor to heterogeneous effects of clinical DSS regarding a broad range of patient-reported outcomes. There is a need to develop and implement evidence-based reporting guidelines to improve the reliability and validity of reporting clinical DSS interventions and enhance their timely translation into practice.Systematic review registration: PROSPERO (CRD42020190977)

Purpose To examine the perspectives of medical and nursing health professionals concerning their roles and responsibilities in providing dietary and exercise advice to cancer survivors, and referrals to allied health professionals. Methods An integrative review. PubMed, CINAHL, PsycINFO, Embase, Web of Science databases, and bibliographies of relevant studies were searched from December 2011 to June 2021. All studies were eligible for inclusion. The Mixed-Methods Appraisal Tool (MMAT) was used to critically appraise included studies. Data were extracted and synthesised regarding the perspectives of medical and nursing health professionals on their roles, responsibilities, barriers, and facilitators. Results Twenty-one studies involving 3401 medical and nursing health professionals and 264 cancer survivors of diverse cancer types were included. Ten quantitative, nine qualitative, and two mixed-methods studies were eligible. All included studies met at least 80% of the quality criteria in the MMAT. Major findings include the following: (1) medical and nursing health professionals were unclear on their roles in providing dietary and exercise advice to cancer survivors but agreed they play a key role in referrals to dietitians and exercise professionals; (2) most cancer survivors valued the involvement of their general practitioner when receiving dietary and exercise advice. Conclusion Although medical and nursing health professionals understand that referrals to allied health professionals form part of their role, there is a lack of clarity regarding their roles to provide dietary and exercise advice to cancer survivors. Future studies should address barriers and facilitators of dietary and exercise advice and referral by medical and nursing health professionals.

Background Symptoms and associated distress in children diagnosed and treated for cancer are uniformly common, yet structured and systematic symptom monitoring is not yet commonplace. With increasing pressures on the healthcare workforce, improved systematic approaches to symptom management are required. Methods Medical, nursing and allied health oncology clinicians developed algorithms using consensus techniques to ascertain thresholds of concern for each symptom for the Symptom Screening in Pediatrics (SPPedi) tool, a Patient Reported Outcome Measure (PROM). Algorithm vetting and refinement were achieved through iterative interviews and consultation with clinicians. Self-management evidence-based recommendations for each symptom were developed. The algorithms were incorporated into an existing smartphone application (MyQCH), as part of the Oncology Hub, and an iterative evaluation is planned to test the feasibility, acceptability, safety, usefulness, and other domains including a hybrid effectiveness trial (ACTRN12621001084875). Discussion Digital solutions provide alternative options for communication, information, and education and opportunities to harness the best of community and hospital services. The Oncology Hub and RESPONSE system is a comprehensive approach to symptom management that includes a suite of tools and resources including a smartphone app that collects PROMs and delivers symptom management advice, as well as written resources for both the families of children with cancer and clinicians. Conclusions Using technology offers new ways to think about how clinicians and families communicate and share information. Understanding how information is exchanged using technology, and how this impacts clinical workflow is critical to successful implementation, and to ultimately optimise symptom assessment management in children with cancer.

1. Telehealth (online videoconferencing) has been used successfully with a range of adolescents and young adults (AYA) to access outpatient, clinical psychology services throughout the COVID-19 pandemic. 2. Our combined, recent clinical experiences demonstrate a range of potentially sensitive clinical interactions with young people and their families can be successfully delivered and experienced using telehealth. 3. The relative lack of uptake in telehealth prior to COVID-19 requires clinicians and researchers to consider the barriers that prevented its use. 4. We argue that a key, lesser-acknowledged, barrier is the contention that telehealth is not capable of transmitting the ‘human-ness’ required to support effective interactions within psychosocial clinical care. 5. Telehealth preferences cannot be assumed for any patient/client demographic; to advance telehealth beyond COVID-19 clinical research needs to find new ways to rigorously capture and evaluate these critical experiential and relational aspects to telehealth-delivered care.

ObjectiveOur aim was to synthesise the available evidence surrounding the structure, processes and outcomes of family meetings in the paediatric palliative care literature.MethodsWe undertook an integrative literature review informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The protocol was registered with PROSPERO (CRD42019138938). Electronic databases were systematically search using keywords and hand searching of reference articles and grey literature was also completed.ResultsTen empirical studies and five theoretical articles were included in the synthesis. Empirical studies provided more information about meeting structure, whereas theoretical articles more frequently described a desired process for planning and undertaking meetings. No articles identified how the success of a meeting was defined or made recommendations for doing so. Despite reports that family meetings are commonly occurring, few articles described outcomes from either the family or clinician perspectives.ConclusionsFamily meetings are essential communication strategies commonly used in paediatric palliative care, yet there is little guidance about how meetings should be organised and conducted, who should participate and when they should occur. The limited data available on the outcomes of family meetings suggest improvements are required to meet the needs of families. We present a framework that synthesises the available evidence. The framework offers an overview of the elements to consider when planning for and undertaking family meetings in paediatric palliative care and may be useful for both clinicians and researchers.

Central venous access devices (CVADs) are integral to cancer care provision. Despite the high prevalence of CVAD complications in children with cancer, preventative strategies are understudied.The aim of this study was to assess study feasibility, occlusive events, thrombolytic use, adverse events, and direct costs of catheter lock solutions.A single-center, parallel-group, pilot randomized controlled trial was undertaken at a tertiary-referral pediatric hospital in Australia. Children 18 years or younger with an oncological or malignant hematological condition and a CVAD were eligible. Participants were 1:1 randomized to (1) normal or (2) heparinized (10-100 U/mL; CVAD-type dependent) saline lock solutions.Of 217 children assessed for eligibility, 61 were recruited and randomized to normal (n = 30; 3850 CVAD days) or heparinized (n = 31; 4036 CVAD days) saline. Eligibility (52%) and recruitment (54%) feasibility targets were not met. Protocol adherence was high (95% assessments), with no attrition. Parent/clinician satisfaction of interventions was high (median, 10/10 clinicians/parents). Complete CVAD occlusion occurred in heparin only (n = 2, 6.7% CVADs; incidence rate [IR], 0.49/1000 CVAD days [0.06-1.78]). Central venous access device partial occlusion was detected in 23.3% of CVADs in heparin (n = 7; IR, 2.73/1000 CVAD days [1.36-4.87]) and 13.8% of CVADs in normal saline (n = 4; IR, 2.59/1000 CVAD days [1.24-4.77]). Thrombolytic agents were used in 16.7% heparin (5 CVADs) and 3.5% normal saline (1 CVAD). Adverse events did not differ between groups.Multisite randomized controlled trials examining CVAD locks are safe, but strategies and resources to increase recruitment and eligibility are required.Both routine CVAD lock solutions seem safe but may not prevent all forms of CVAD-associated harm.

Objective: To synthesise existing qualitative research exploring the experiences of parents caring for children with cancer during the end-of-life phase, and the factors that influence parental decision making when choosing the location of end-of-life care and death for their child. Results: This review included 15 studies involving 460 parents of 333 children and adolescents who died from progressive cancer. Where reported, the majority (58%) of children died at home or in a hospital (39%), with only a small fraction dying in a hospice. Factors impacting decision-making for location of care included the quality of communication and the quality of care available. Themes related to choosing home for end-of-life care and death included: honouring the child’s wishes, familiarity of home, and parents’ desire to be their child’s primary carer. Preference for location of death in hospital included trust in hospital staff, practical logistics and the safety of the hospital environment.

BACKGROUND There is an urgent need to reduce preventable deaths and hospitalizations from prescription opioid harms and minimize the negative effect opioid misuse can have on injured individuals, families, and the wider community. Data linkage between administrative hospitalization records for injured patients and community opioid dispensing can improve our understanding of the health and surgical trajectories of injured persons and generate insights into corresponding opioid dispensing patterns. OBJECTIVE The Community Opioid Dispensing after Injury (CODI) study aims to link inpatient hospitalization data with opioid dispensing data to examine the distribution and predictive factors associated with high or prolonged community opioid dispensing among adults, for 2 years following an injury-related hospital admission. METHODS This is a retrospective population-based cohort study of adults aged 18 years or older hospitalized with an injury in Queensland, Australia. The study involves the linkage of statewide hospital admissions, opioid prescription dispensing, and mortality data collections. All adults hospitalized for an injury between January 1, 2014, and December 31, 2015, will be included in the cohort. Demographics and injury factors are recorded at the time of the injury admission. Opioid dispensing data will be linked and extracted for 3 months prior to the injury admission date to 2 years after the injury separation date (last date December 31, 2017). Deaths data will be extracted for the 2-year follow-up period. The primary outcome measure will be opioid dispensing (frequency and quantity) in the 2 years following the injury admission. Patterns and factors associated with community opioid dispensing will be examined for different injury types, mechanisms, and population subgroups. Appropriate descriptive statistics will be used to describe the cohort. Regression models will be used to examine factors predictive of levels and duration of opioid use. Nonparametric methods will be applied when the data are not normally distributed. RESULTS The project is funded by the Royal Brisbane and Women’s Hospital Foundation. As of November 2021, all ethics and data custodian approvals have been granted. Data extraction and linkage has been completed. Data management and analysis is underway with results relating to an analysis for blunt chest trauma patients expected to be published in 2022. CONCLUSIONS Little is currently known of the true prevalence or patterns of opioid dispensing following injury across Queensland. This study will provide new insights about factors associated with high and long-term opioid dispensing at a population level. This information is essential to inform targeted public policy and interventions to reduce the risk of prolonged opioid use and dependence for those injured. The novel work undertaken for this project will be vital to planning, delivering, monitoring, and evaluating health care services for those injured. The findings of this study will be used to inform key stakeholders as well as clinicians and pain management services. INTERNATIONAL REGISTERED REPORT RR1-10.2196/36357

Adolescent and young adult (AYA) cancer patients and survivors are growing and face with distinct issues from paediatric and older cancer survivors. Hence it is important the issues they encounter are measured using appropriate Patient Reported Outcome Measures (PROMs). We searched PubMed, EMBASE, CINAHL, and PsycINFO for articles including: (1) AYAs (ages 15-39), (2) Malignant neoplasms, and (3) PROMs. This resulted in 3,566 unique articles, 523 were included for full text review, of which 175 were included. These studies included 203 distinct tools to measure PROMs across 31 domains. Physical function was most frequently measured domain, followed by social, emotional and mental health. The most commonly used tools were the EORTC QLQ-C30, HADS and SF-36. PROMs used in AYA cancer patients is a complex topic, this comprehensive review serves as a useful reference for researchers, clinicians and health services who want to better understand, and improve, outcomes among their patients.

Children's agency in their own lives is increasingly recognised as important, including within paediatric health care. The issue of acknowledging child agency is complex in the context of paediatric palliative care, where children have serious and complex conditions that often impact their ability to verbally communicate with others. This study explores how clinicians and parents/guardians direct talk towards a child patient when they are present in a consultation. Conversation analysis methods were used to examine 74 video-recorded paediatric palliative care consultations. Detailed turn-by-turn examination of the recorded consultations identified the recurrent use of a practice described by linguists as a 'tag question', which follows some statement (e.g. 'he loves that, don't ya'). Both clinicians and parents/guardians often directed these tag questions towards the child patient. Analysis demonstrated how these tag questions: (1) validated the child's epistemic authority over what was being said and (2) made a child's response a possible, but not necessary, next action. The findings are discussed in relation to the sociology of child agency and how this agency is acknowledged and displayed within and through social interaction. This research provides direct evidence of children's competence as informants about their own symptoms.

‘Financial toxicity’ is defined as the financial distress or hardship arising as a consequence of a cancer diagnosis and its treatment [1]. The main contributors are high cancer-related patient out-of-pocket costs from hospitalisations, medications, multiple courses of therapy, ongoing imaging scans, travel, and medical aids, as well as reduced income from lost work time. For some cancer types, patients may not be able perform normal duties at work due to fatigue, somatic and neurocognitive symptoms, or intensive treatments. Broader societal costs of caring for someone with cancer involve social service use, high uptake of disability support pensions [2], and long-term support needs. Much more needs to be done to raise awareness of and optimal management of financial toxicity within individuals and families affected by cancer. To date, several financial counselling or navigation pilot studies have been conducted [3,4,5,6]. While these aim to alleviate the impacts of financial burden in patients with cancer, no screening initiative has been trialled. Herein we propose the value of using Electronic Finance-Related Outcomes Measures (eFROMs) to assess and monitor financial toxicity across the continuum of care.

Background: Symptom management is a cornerstone of quality care and has the potential to vastly influence patient experiences. The supportive care needs of children, however, are not well described. Objective: To describe documentation about assessment and occurrence of symptoms in medical records of children with cancer, and to compare the profile of documented symptoms with child self-report. Methods: Twelve weeks of medical records of children (8-18 years) newly diagnosed with cancer were reviewed and data were extracted regarding symptom assessment and occurrence. A second cohort of children attending oncology outpatients completed the electronic Symptom Screening in Pediatrics self-report of symptom bother. They also answered additional questions about other symptoms and the experience of self-report. We evaluated the profile of symptoms recorded as assessed by healthcare providers and self-reported by children. Results: 1316 symptoms were identified in 3642 assessments. The symptoms most commonly documented by medical and nursing staff were nausea, pain and appetite. Allied health staff most frequently documented fatigue, feeling scared or sad. Forty-eight children completed self-report for the same symptoms and identified fatigue, appetite and taste were the most bothersome. Children were positive about the experience of completing self-report. Conclusion: This study adds further to the evidence about the importance of obtaining information beyond routine clinical assessment from children themselves. Implications for practice: Healthcare providers do not routinely identify all distressing symptoms during clinical encounters. Use of Patient Reported Outcome Measures in children is feasible, acceptable, and empowers children to communicate about symptoms, which can facilitate prompt intervention.

AIM: Following the establishment of paediatric palliative care services over recent decades, this study sought to identify information to inform future policy and practice. METHODS: A rapid review using thematic synthesis was conducted to synthesise existing information about improving paediatric palliative care. Information was extracted in relation to key areas for investment and change: quality, access, advance care planning, skills, research, collaboration and community awareness. RESULTS: A total of 2228 literature sources were screened, with 369 included. Synthesised information identified clear ways to improve quality of care, access to care, advance care planning, and research and data collection. The synthesis identified knowledge gaps in understanding how to improve skills in paediatric palliative care, collaboration across Australian jurisdictions and community awareness. CONCLUSIONS: The findings of this review bring together information from a vast range of sources to provide action-oriented information to target investment and change in paediatric palliative care over the coming decades.

Background Intense and aggressive treatment regimens for most children’s cancer have achieved vast improvements in survival but are also responsible for both a high number and burden of symptoms. The use of Patient Reported Outcome Measures (PROMs) demonstrates a range of benefits for improved symptom management in adults with cancer. There are, however, multiple barriers to integrating PROMs into routine care in children and adolescents with cancer. This study aims to evaluate: (1) the effectiveness of electronic PROMs to generate stratified alerts, symptom management recommendations and graphical summaries (the RESPONSE system) to improve health outcomes and (2) the implementation of the RESPONSE system by assessing feasibility, acceptability, satisfaction, and sustainability. Methods A pragmatic hybrid II effectiveness-implementation controlled trial, using mixed methods, will be undertaken, advancing both knowledge of the effectiveness of the intervention and implementation factors. One-hundred and sixty children with cancer receiving active treatment will be recruited 1:1 to a non-randomised study involving two groups with an equal number of participants in each group. The intervention group (n = 80) will be prospectively recruited to receive the RESPONSE system intervention over eight weeks, versus the historical matched control group (n = 80) who will complete the ePROMs without access to the RESPONSE system. The primary outcome of the effectiveness trial is change between groups in total symptom burden. Secondary outcomes include child health-related quality-of-life and implementation outcomes. Trial data will be analysed using linear mixed-effects models. Formative implementation evaluation is informed by CFIR and ERIC frameworks and implementation outcomes will be mapped to the RE-AIM framework and include interviews, field notes, as well as administrative data to evaluate feasibility, acceptability, satisfaction and sustainability. Trial registration number ACTRN12621001084875. Retrospectively Registered 16 August 2021.

Background: Effective coordination and integration of care between health care providers is critical to manage complex, chronic medical conditions. Aim: Describe the advanced practice profile and activities of nurse navigators who provide a service for patients with chronic health conditions. Design: An observational study was conducted in four health services, in Queensland, Australia. Methods: In part one, nurse navigators completed a survey incorporating the Advanced Practice Role Delineation tool. In part two, nurse navigators completed a work activity diary, capturing the time spent performing daily activities, modes of communication and referral sources. Findings: Twenty-three and 18 nurse navigators participated in the survey and diary, respectively. Participants were experienced nurses, working full-time. Participants reported spending a great extent of time performing direct comprehensive care, support of systems and education in surveys. The diaries captured a mean of 20 working days per participant, a total of 5,748 work activities. including care of 615 patients. The majority of nurse navigator activities were performed within the direct comprehensive care domain. Communication predominantly occurred with patients, families, hospital health professionals either in person, at a healthcare facility or via phone. Discussion: Our research identified three focus areas of nurse navigator activities: direct comprehensive care, support of systems and education. Further work is required to extend the nurse navigators’ unique contribution to research and publication and professional leadership. Conclusions: This study established baseline knowledge regarding advanced practice profiles and work activities of nurse navigators, which can be utilised to improve current processes and future enhancement of the role.