Cancer Nurses' Voices and Recommendations to Address Workforce Challenges: A Qualitative Analysis.

OBJECTIVES: Amidst the fulfilment of making a positive impact on patients' lives, cancer nurses also contend with high workloads, limited resources, and barriers to career advancement. Understanding the perceptions of cancer nurses is essential in addressing these challenges and fostering an environment that promotes both professional satisfaction and optimal patient care. Our aim was to explore Australian cancer nurses' experiences and perspectives of workforce challenges and their proposed solutions to address them. METHODS: The Cancer Nurses Society Australia workforce cross-sectional survey was distributed online in 2022 through professional networks and social media. Free text responses to open-ended questions were analyzed using qualitative content analysis and inductive processes. RESULTS: Responses from 601 cancer nurses highlight the intricate interplay between rewards and obstacles experienced by the profession and identify key areas for improvement. Positive and negative quotes highlight the passion of cancer nurses which were summarized into themes and subthemes: 1) Finding fulfilment while struggling against the tide. While feeling undervalued and facing workload pressures, burnout and limited opportunities for career progression, nurses express love for their jobs, finding it rewarding yet emotionally challenging. 2) Grassroots solutions versus organizational inertia. Proposed solutions included addressing nurse-to-patient ratios, proactive succession planning, more specific education, dedicated time for learning, and mentorship and career development programs. Perceived barriers to initiatives included lethargic management and resistance to change. Networking opportunities, appropriate remuneration, and interdisciplinary teamwork with an appreciation of individual expertise are desired. CONCLUSIONS: Our findings give a voice to the cancer nurses of Australia. Nurses identified a range of solutions to address workforce challenges. IMPLICATIONS FOR NURSING PRACTICE: Addressing the systemic issues that contribute to high workload and impede nurses' well-being and their recognition, and promoting policies to support professional growth will increase satisfaction, enhance patient care outcomes, and contribute to a sustainable workforce.

Quality of life and family functioning 12 months after diagnosis of childhood brain tumour: A longitudinal cohort study.

BACKGROUND: The wellbeing of a child with brain tumour is affected by several factors. We present the first investigation of quality of life and family functioning in a parent and child across the first 12 months after diagnosis, examining potential factors to guide the provision of psychosocial resources to families who most need them. PROCEDURE: Data were collected from parents/carers in Queensland, Australia, from 2020 to 2023. Child (parent/carer-proxy reported) and carer quality of life was assessed across three timepoints (repeated measures analysis of variance [ANOVA]) and by five potential co-variates (mixed between-within ANOVA). Family functioning was assessed across two timepoints (repeated-measures t-test), and by potential co-variates (repeated measures ANOVA). Univariate relationships were explored with Pearson's correlation coefficient; significant relationships were entered into multiple regression models. RESULTS: Ninety-six diverse families were represented. Quality of life (child, carer) and family functioning did not change across time. Children from households with lower income reported worse cognitive difficulties (p = .023) and pain and hurt (p = .013) than those from a higher income. Caregiver quality of life was poorer for those whose child had received chemotherapy and/or radiation, was aged less than 4 years at diagnosis, and had a lower household income. At 12 months, caregiver quality of life was correlated with family functioning (r = -.45, p < .001), with positive adaptation being a significant key predictor (beta = -.66, p < .005). CONCLUSIONS: The following factors indicate a need for increased early psychosocial support: cognitive difficulties, aged <4 years at diagnosis, receiving chemotherapy and/or radiation, and low household income.

Preventing adverse events during paediatric cancer treatment: protocol for a multi-site hybrid randomised controlled trial of catheter lock solutions (the CLOCK trial).

INTRODUCTION: Central venous access devices (CVADs) are commonly used for the treatment of paediatric cancer patients. Catheter locking is a routine intervention that prevents CVAD-associated adverse events, such as infection, occlusion and thrombosis. While laboratory and clinical data are promising, tetra-EDTA (T-EDTA) has yet to be rigorously evaluated or introduced in cancer care as a catheter lock. METHODS AND ANALYSIS: This is a protocol for a two-arm, superiority type 1 hybrid effectiveness-implementation randomised controlled trial conducted at seven hospitals across Australia and New Zealand. Randomisation will be in a 3:2 ratio between the saline (heparinised saline and normal saline) and T-EDTA groups, with randomly varied blocks of size 10 or 20 and stratification by (1) healthcare facility; (2) CVAD type and (3) duration of dwell since insertion. Within the saline group, there will be a random allocation between normal and heparin saline. Participants can be re-recruited and randomised on insertion of a new CVAD. Primary outcome for effectiveness will be a composite of CVAD-associated bloodstream infections (CABSI), CVAD-associated thrombosis or CVAD occlusion during CVAD dwell or at removal. Secondary outcomes will include CABSI, CVAD-associated-thrombosis, CVAD failure, incidental asymptomatic CVAD-associated-thrombosis, other adverse events, health-related quality of life, healthcare costs and mortality. To achieve 90% power (alpha=0.05) for the primary outcome, data from 720 recruitments are required. A mixed-methods approach will be employed to explore implementation contexts from the perspective of clinicians and healthcare purchasers. ETHICS AND DISSEMINATION: Ethics approval has been provided by Children's Health Queensland Hospital and Health Service Human Research Ethics Committee (HREC) (HREC/22/QCHQ/81744) and the University of Queensland HREC (2022/HE000196) with subsequent governance approval at all sites. Informed consent is required from the substitute decision-maker or legal guardian prior to participation. In addition, consent may also be obtained from mature minors, depending on the legislative requirements of the study site. The primary trial and substudies will be written by the investigators and published in peer-reviewed journals. The findings will also be disseminated through local health and clinical trial networks by investigators and presented at conferences. TRIAL REGISTRATION NUMBER: ACTRN12622000499785.

Building alternative payment models in health care.

Introduction: Global interest is growing in new value-based models of financing, delivering, and paying for health care services that could produce higher-quality and lower cost outcomes for patients and for society. However, research indicates evidence gaps in knowledge related to alternative payment models (APMs) in early experimentation phases or those contracted between private insurers and their health care provider-partners. The aim of this research was to understand and update the literature related to learning how industry experts design and implement APMs, including specific elements of their models and their choice of stakeholders to be involved in the design and contractual details. Methods: A literature review was conducted to guide the research focus and to select themes. The sample was selected using snowball sampling to identify subject matter experts (SMEs). Researchers conducted 16 semi-structured interviews with SMEs in the US, the Netherlands, and Germany in September and October 2021. Interviews were transcribed and using Braun and Clarke's six-phase approach to thematic analysis, researchers independently read, reviewed, and coded participants' responses related to APM design and implementation and subsequently reviewed each other's codes and themes for consistency. Results: Participants represented diverse perspectives of the payer, provider, consulting, and government areas of the health care sector. We found design considerations had five overarching themes: (1) population and scope of care and services, (2) benchmarking, metrics, data, and technology; (3) finance, APM type, risk adjustment, incentives, and influencing provider behavior, (4) provider partnerships and the role of physicians, and (5) leadership and regulatory issues. Discussion: This study confirmed several of the core components of APM model designs and implementations found in the literature and brought insights on additional aspects not previously emphasized, particularly the role of physicians (especially in leadership) and practice transformation/care processes necessary for providers to thrive under APM models. Importantly, researchers found significant concerns relevant for policymakers about regulations relating to health data sharing, rigid price-setting, and inter-organizational data communication that greatly inhibit the ability to experiment with APMs and those models' abilities to succeed long-term.

Adopting a systems-thinking approach to optimise dietary and exercise referral practices for cancer survivors.

PURPOSE: Service referrals are required for cancer survivors to access specialist dietary and exercise support. Many system-level factors influence referral practices within the healthcare system. Hence, the aim of this study was to identify system-level factors and their interconnectedness, as well as strategies for optimising dietary and exercise referral practices in Australia. METHODS: A full-day workshop involving national multidisciplinary key stakeholders explored system-level factors impacting dietary and exercise referral practices. Facilitated group discussions using the nominal group technique identified barriers and facilitators to referral practices based on the six World Health Organisation (WHO) building blocks. The systems-thinking approach generated six cognitive maps, each representing a building block. A causal loop diagram was developed to visualise factors that influence referral practices. Additionally, each group identified their top five strategies by leveraging facilitators and addressing barriers relevant to their WHO building block. RESULTS: Twenty-seven stakeholders participated in the workshop, including consumers (n = 2), cancer specialists (n = 4), nursing (n = 6) and allied health professionals (n = 10), and researchers, representatives of peak bodies, not-for-profit organisations, and government agencies (n = 5). Common system-level factors impacting on referral practices included funding, accessibility, knowledge and education, workforce capacity, and infrastructure. Fifteen system-level strategies were identified to improve referral practices. CONCLUSION: This study identified system-level factors and strategies that can be applied to policy planning and practice in Australia.

Contextualizing Inequities in COVID Vaccination Trends Among Project REFOCUS Pilot Sites: Racism-Related Determinants of Health.

Introduction: Coronavirus disease (COVID) dashboards rarely provide insights about the racialized contexts in which vaccination inequities occur. Objective: The purpose of this study was to use the emerging Project REFOCUS dashboard to contextualize COVID vaccination patterns among 6 diverse communities. Methods: We queried the dashboard to generate descriptive statistics on vaccination trends and racism-related contextual factors among the 6 Project REFOCUS pilot sites (Albany, Georgia, Bronx, New York, Detroit, Michigan, Helena-West Helena, Arkansas, San Antonio, Texas, and Wake County, North Carolina). Results: Vaccination rates, demographic indicators, and contextual factors differed across sites. As of October 17, 2022, the proportion of people who had received at least 1 COVID vaccine dose ranged from 58.4% (Wayne County, Michigan) to 95.0% (Wake County, North Carolina). The pilot sites with the greatest percentage of Black residents (Dougherty County, Georgia, Wayne County, Michigan, and Phillips County, Arkansas) had lower proportions of fully vaccinated people. Wayne County, Michigan, had the highest level of residential segregation between Black and White residents (78.5%) and non-White and White residents (68.8%), whereas Phillips County, Arkansas, had the highest overall mortgage denial rates (38.9%). Both counties represent settings where over 75.0% of residents report Black race and over 30.0% of the population live in poverty. Discussion: The dashboard integrates racism-related factors with COVID vaccination visualizations and provides a fuller picture of the context in which COVID trends are occurring. Conclusions: Community organizers, researchers, policymakers, and practitioners can track racism-related factors and other social determinants of health as part of the contexts in which COVID-related inequities occur.

Unleashing patient voices: empowering adverse event assessment with complete patient-reported outcomes.

The 124-item patient reported-outcome common terminology criteria for adverse events (PRO-CTCAE) questionnaire, assessing 78 symptoms, is widely used in cancer clinical trials to identify side effects. However, its regular use in routine cancer care is rarely reported. We aimed to investigate the feasibility of weekly PRO-CTCAE completion over 9 weeks in a prospective study with 30 patients with cancer undergoing chemotherapy. Participants were asked to complete electronic surveys with reminders, but no feedback or incentives. Only 136 (50%) of the planned 270 time points at which a PRO-CTCAE self-report was expected were completed, with an additional 21 (8%) partially completed, and represents a failure to achieve the expected level of completion. Patients reported experiencing up to 51 and a median of 30 symptoms across all time points, highlighting the complexity of symptom assessment in acute cancer care. While weekly implementation of the PRO-CTCAE may not be feasible outside of clinical trial settings, this study highlights the breadth of symptoms experienced.

Childhood cancer models of survivorship care: a scoping review of elements of care and reported outcomes.

PURPOSE: This study aimed to systematically map elements of care and respective outcomes described in the literature for different models of post-treatment care for survivors of childhood cancer. METHODS: MEDLINE, CINAHL, and Embase were searched with combinations of free text terms, synonyms, and MeSH terms using Boolean operators and are current to January 2024. We included studies that described post-treatment cancer survivorship models of care and reported patient or service level elements of care or outcomes, which we mapped to the Quality of Cancer Survivorship Care Framework domains. RESULTS: Thirty-eight studies with diverse designs were included representing 6101 childhood cancer survivors (or their parent/caregiver) and 14 healthcare professionals. A diverse range of models of care were reported, including paediatric oncologist-led long-term follow-up, multi-disciplinary survivorship clinics, shared-care, and primary care-led follow-up. Elements of care at the individual level most commonly included surveillance for cancer recurrence as well as assessment of physical and psychological effects. At the service level, satisfaction with care was frequently reported but few studies reported how treatment-related-late effects were managed. The evidence does not support one model of care over another. CONCLUSIONS: Gaps in evidence exist regarding distal outcomes such as costs, health care utilization, and mortality, as well as understanding outcomes of managing chronic disease and physical or psychological effects. The findings synthesized in this review provide a valuable reference point for future service planning and evaluation. IMPLICATIONS FOR CANCER SURVIVORS: Decades of research highlight the importance of survivorship care for childhood cancer survivors who are at risk of serious treatment-related late effects. This review emphasizes there is no single, 'one-size fits all' approach for delivering such care to this vulnerable population.

Physical function patient-reported outcomes among adolescent and young adult cancer survivors: A systematic review.

BACKGROUND: The physical challenges faced by adolescents and young adults (AYA) after a cancer diagnosis may be different from those experienced by paediatric and older adult cancer patients. Patient-reported outcome measures (PROMs) are valuable tools that can be useful in exploring the experiences of AYAs and identifying important issues, recurrent themes and areas to potentially improve quality of life. OBJECTIVE: We compared patient-reported physical function outcomes between AYAs diagnosed with cancer and non-cancer controls. METHOD: This paper builds on a scoping review published in early 2023 and focuses on PROMs related to physical function. RESULTS: This systematic review includes 16 studies that measured and reported on physical function PROMs in AYA cancer survivors compared with their cancer-free peers. Of these studies, 14 found that physical function in AYA survivors was significantly worse. This paper also includes a meta-analysis conducted on 5 studies using the EORTC-QLQ-C30 to measure physical function, which found that physical function score was an average of 7.03 (95% CI: -10.21, -3.86) points lower in the AYA cancer group, compared to their cancer free-peers, a difference that is clinically meaningful. CONCLUSIONS: The results overwhelmingly demonstrate that AYAs post a cancer diagnosis have worse health-related quality of life from a physical function perspective than their cancer-free peers, providing a compelling argument for the need to address this issue. All but one of the studies were cross-sectional, which highlights the need for further assessment of this group longitudinally throughout their cancer journey.

Financial Aid in Children, Adolescents and Young Adult's Cancer Care: A Scoping Review.

Background: The financial burden resulting from cancers on families is higher when it arises in young people compared with older adults. Previous research has provided insight into the financial toxicities associated with childhood cancer, but less is known about the efficacy of financial aid systems in reducing the financial burden on families. We conducted a scoping review to identify the determinants of success and failure of financial aid. Methods: Five databases were searched for articles published between January 1, 2000 and December 1, 2022. Dual processes were used to screen and select studies. Through thematic content analysis, we identified barriers and enablers of financial aid, categorised by country income level. Results: From 17 articles, which were evenly split between high-income countries and upper middle- to low-income countries, four major themes emerged: (1) accessibility of support, (2) delivery of support, (3) administration, and (4) psychosocial factors. Within these themes, the enablers identified were (1) support navigators, (2) establishing a direct contact between donors and beneficiaries, (3) implementation of digital solutions to improve outreach, and (4) using cultural and community values to encourage donor engagement. Conclusions: This scoping review identified the determinants of success and failure of financial aid in supporting families in the context of childhood, adolescent, and young adult (CAYA) cancers. By understanding the barriers and enablers identified in this review, organizations could develop pragmatic evidence-based care models and policies to ensure access to assistance is equitable and appropriate for families experiencing CAYA cancers.

Supporting Cancer Survivors Following Treatment for Non-Hodgkin's and Hodgkin's Lymphoma: A Pilot Study Assessing the Feasibility and Process Outcomes of a Nurse-Led Intervention.

OBJECTIVE: Lymphoma is the sixth most common cancer in Australia and comprises 2.8% of worldwide cancer diagnoses. Research targeting development and evaluation of post-treatment care for debilitating complications resulting from the disease and its treatment is limited. This study aimed to assess the feasibility and acceptability of a nurse-led survivorship intervention, post-treatment in Hodgkin's and non-Hodgkin's lymphoma survivors. METHODS: A single-center, prospective, 3-arm, pilot, randomized controlled, parallel-group trial was used. People with lymphoma were recruited and randomized to the intervention (ENGAGE), education booklet only, or usual care arm. Participants receiving ENGAGE received an educational booklet and were offered 3 consultations (via various modes) with a cancer nurse to develop a survivorship care plan and healthcare goals. Participant distress and intervention acceptability was measured at baseline and 12-wk. Acceptability was measured via a satisfaction survey using a 11-point scale. Feasibility was measured using participation, retention rates, and process outcomes. Data were analyzed using descriptive statistics. RESULTS: Thirty-four participants with HL and NHL were recruited to the study (11 = intervention, 11 = information only, 12 = usual care). Twenty-seven participants (79%) completed all time points from baseline to 12 wk. Seven (88%) of the 8 participants receiving ENGAGE completed all consultations using various modes to communicate with the nurse (videoconference 14/23, 61%; phone 5/23, 22%; face-to-face 4/23, 17%). Participants who completed the intervention were highly satisfied with ENGAGE. CONCLUSION: The ENGAGE intervention is feasible and highly acceptable for lymphoma survivors. These findings will inform a larger trial assessing effectiveness and cost effectiveness of ENGAGE.

Goal-directed therapeutic exercise for paediatric posterior fossa brain tumour survivors: a qualitative analysis of experiences.

PURPOSE: To explore child and parent experiences of a 12-week goal-directed therapeutic exercise intervention in paediatric posterior fossa brain tumours survivors and to identify features of the program that influenced program adherence and acceptability. METHODS: Eleven interviews were conducted; five parent-child dyads (mothers = 83%) and one parent only (mean child age = 10.6 ± 3.0 years; 83% male). Posterior fossa brain tumour survivors, who participated in a weekly goal-directed exercise program for 12 weeks, completed semi-structured interviews to discuss their experience of the program. An inductive content analysis was undertaken. Interviews were transcribed, imported into NVivo and independently coded by two reviewers. Code and content categories were iteratively discussed and refined. RESULTS: Five content categories were generated: (1) perceived improvements, (2) program logistics, (3) activity selection, (4) connection with the therapist and (5) options for technology. All participants valued the tailored exercise program and described improvements in movement competence. Children and their parents discussed preferring home- and community-based locations and favoured face-to-face delivery. Occasionally, parents reported difficulty completing the home program due to low child motivation or family time restrictions. Multiple families suggested an interactive digital application would be an effective delivery channel for the supplemental home-based program. CONCLUSION: A goal-directed exercise program delivered at home and in community-based locations was considered valuable and helpful for improving movement competence in paediatric survivors of posterior fossa brain tumour. TRIAL REGISTRATION: ACTRN12619000841178 June 12, 2019.

Patient Reported Fatigue Among Adolescent and Young Adult Cancer Patients Compared to Non-Cancer Patients: A Systematic Review and Meta-Analysis.

Adolescent and young adult (AYA) cancer patients and survivors are a growing population due to more frequent diagnoses and improved survival. Fatigue is a common symptom experienced by cancer patients and it is often missed by health care professionals. Patient reported outcome measures (PROMs) can assist in evaluating patient reported fatigue. This systematic review aims to determine if AYA cancer patients report more fatigue than AYAs who have not been diagnosed with cancer. We used a subset of articles from a larger review that searched PubMed, EMBASE, CINAHL, and PsycINFO to determine which PROMs and domains are currently being used to evaluate AYA cancer. This study identified 175 articles related to PROMs in the AYA cancer population. Articles with PROMs reporting on fatigue/vitality were used in this review. From the original 175 articles, we identified 8 fatigue/vitality articles for this review. All eight articles found an increase in fatigue/decrease in vitality in the AYA cancer population compared to healthy controls. A meta-analysis was performed on four articles that used the same PROM tool (EORTC QLQ-C30). This found a statistically significant and clinically meaningful increase in mean fatigue of 12.5 95% confidence interval: 3.3-21.8 points (scale 0-100, higher number indicates more fatigue) in the AYA cancer group compared to healthy noncancer controls. Fatigue in the AYA cancer population is a significant issue, it is often undetected and underreported, and early interventions are needed to prevent the negative subsequent sequelae.

Non-pharmacological interventions for chemotherapy-induced diarrhoea and constipation management: A scoping review.

PURPOSE: Chemotherapy-induced diarrhoea (CID) and constipation (CIC) are among the most common and severe gastrointestinal symptoms related to chemotherapy. This review aimed to identify and describe the evidence for non-pharmacological interventions for the management of CID and CIC. METHODS: The scoping review was based on the Joanna Briggs Institute methodology and reported in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. Evidence from five databases were included: CINAHL, MEDLINE, Embase, PubMed, and APA PsycInfo. Data were systematically identified, screened, extracted and synthesised narratively to describe the evidence for non-pharmacological interventions and their effects on CID and CIC. RESULTS: We included 33 studies, of which 18 investigated non-pharmacological interventions for CID management, six for CIC management, and nine for both CID and CIC management. Interventions were categorized into five groups, including (1) digital health interventions, (2) physical therapies, (3) diet and nutrition therapies, (4) education, and (5) multimodal. Diet and nutrition therapies were the most common to report potential effectiveness for CID and CIC outcomes. Most of the interventions were implemented in hospitals under the supervision of healthcare professionals and were investigated in randomised control trials. CONCLUSIONS: The characteristics of non-pharmacological interventions were diverse, and the outcomes were inconsistent among the same type of interventions. Diet and nutritional interventions show promise but further research is needed to better understand their role and to contribute to the evidence base. Nurses are well placed to assess and monitor for CIC and CID, and also deliver effective non-pharmacological interventions.

Questions directed to children with diverse communicative competencies in paediatric healthcare consultations.

OBJECTIVE: This paper examines question-response sequences, in which clinicians asked questions to child patients who appear to interact using means other than the verbal mode of communication. METHODS: Conversation Analysis methods were used to study questions in 46 paediatric palliative care consultations. These questions were directed towards children who observably used vocalisations and embodied modes of communication (e.g., gaze, gesture and facial expressions) but did not appear to use the verbal mode. RESULTS: Most questions asked children either about their willingness and preferences for a proposed next activity, or their current feelings, experiences or intentions. Questions involved children by foregrounding their preferences and feelings. These questions occasioned contexts where the child's vocal or embodied conduct could be treated as a relevant response. CONCLUSION: This paper demonstrates how questions are used to involve children in consultations about their own healthcare, and how their views come to be understood by clinicians and family members, even when children interact using means other than the verbal mode of communication. PRACTICE IMPLICATIONS: Questions can be asked of both children who do and do not verbally communicate. When asking questions, clinicians should be mindful of the modes of communication an individual child uses to consider how the child might meaningfully respond.

The cancer nursing workforce in Australia: a national survey exploring determinants of job satisfaction.

BACKGROUND: To maintain and improve the quality of the cancer nursing workforce, it is crucial to understand the factors that influence retention and job satisfaction. We aimed to investigate the characteristics of cancer nurses in Australia and identify predictors of job satisfaction. METHODS: We analysed data from an anonymous cross-sectional survey distributed through the Cancer Nurses Society Australia membership and social media platforms from October 2021 to February 2022. The survey was compared to national nursing registration data. Data were analysed with non-parametric tests, and a stepwise, linear regression model was developed to best predict job satisfaction. RESULTS: Responses were received from 930 cancer nurses. Most respondents (85%) described themselves as experienced nurses, and more than half had post-graduate qualifications. We identified individual, organizational, and systemic factors that contribute to job satisfaction and can impact in workforce shortages. The findings include strategies to address and prioritize workforce challenges. There were 89 different titles for advanced practice nursing roles. Managing high workload was a reported challenge by 88%. Intention to stay less than 10 years was reported by nearly 60%; this was significantly correlated with job satisfaction and age. Significantly higher scores for job satisfaction were associated with those who had career progression opportunities, career development opportunities, adequate peer support and a clearly defined scope of role. Conversely, job satisfaction scores decreased the more people agreed there was a lack of leadership and they had insufficient resources to provide quality care. CONCLUSION: Cancer nurses are critical to the delivery of cancer care however, the workforce faces multiple challenges. This study provides an understanding of the Australian cancer nursing workforce characteristics, their roles and activities, and highlights important considerations for retaining nurses in the profession.

Supportive Care in Pediatric Oncology: Opportunities and Future Directions.

The optimization of outcomes for pediatric cancer patients relies on the successful advancement of supportive care to ease the treatment burden and mitigate the long-term impacts of cancer therapy. Advancing pediatric supportive care requires research prioritization as well as the development and implementation of innovations. Like the prevailing theme throughout pediatric oncology, there is a clear need for personalized or precision approaches that are consistent, evidence-based, and guided by clinical practice guidelines. By incorporating technology and datasets, we can address questions which may not be feasible to explore in clinical trials. Now is the time to listen to patients' voices by using patient-reported outcomes (PROs) to ensure that their contributions and experiences inform clinical care plans. Furthermore, while the extrapolation of knowledge and approaches from adult populations may suffice in the absence of pediatric-specific evidence, there is a critical need to specifically understand and implement elements of general and developmental pediatrics like growth, nutrition, development, and physical activity into care. Increased research funding for pediatric supportive care is critical to address resource availability, equity, and disparities across the globe. Our patients deserve to enjoy healthy, productive lives with optimized and enriched supportive care that spans the spectrum from diagnosis to survivorship.

Quality of life and family functioning soon after paediatric brain tumour diagnosis: A cross-sectional observational study.

PURPOSE: There is scant scholarly exploration of quality of life in families with a child who has a brain tumour early after diagnosis, despite this being a pivotal point in their illness trajectory. We aimed to describe quality of life in children and their parents, and family functioning, within six months of diagnosis; and to examine if this differed for various subpopulations. METHOD: This is a cross-sectional analysis of baseline data of an ongoing longitudinal survey. Parents/carers of a child who had a diagnosis of a malignant or non-malignant brain tumour and were receiving care at the Queensland Children's Hospital were invited to complete an electronic survey. Univariate analyses were conducted with potential covariates and each dependent variable (child quality of life, caregiver quality of life, family functioning). Potential relationships between the outcome variables were explored through Pearson's correlation coefficient. RESULTS: Seventy-nine diverse families completed the survey between August 2020 and September 2022. Caregiver quality of life did not differ by the child's tumour risk grade. It was lowest for those with a child who had undergone chemotherapy and/or radiation compared to surgery only, and for those with a child who had been diagnosed 6 months prior to survey completion compared to more recent diagnoses. A third of families reported problematic family functioning. Lower levels of problematic family functioning were associated with higher caregiver quality of life (r = -.49, p < .001). CONCLUSIONS: Our findings suggest caregivers need greater psychosocial support early after diagnosis, and supports the need for family-centred care that fosters communication and cohesiveness.

Preparing for Death While Investing in Life: A Narrative Inquiry and Case Report of Home-Based Paediatric Palliative, End-of-Life, and After-Death Care.

Paediatric palliative care is pivotal for addressing the complex needs of children with incurable diseases and their families. While home-based care offers a familiar and supportive environment, delivering comprehensive services in this context is challenging. The existing literature on home-based palliative care lacks detailed guidance for its organization and implementation. This qualitative narrative inquiry explores the organization and provision of home-based paediatric palliative care. Data were collected from healthcare practitioners using conversations, storytelling, and reflective journaling. Schwind's Narrative Reflective Process was applied to synthesize the data, resulting in an in-depth case description. The narrative approach illuminates the complexities of home-based paediatric palliative, end-of-life, and after-death care. Key findings encompass the importance of early-care coordination, interprofessional collaboration, effective symptom management, emotional and psychosocial support, and comprehensive end-of-life planning. Through the case study of the child patient, the challenges and strategies for providing holistic, family-centred care within the home environment are described. Practical insights gained from this report can inform the development and improvement of home-based palliative care programs, benefiting researchers, practitioners, and policymakers seeking to optimize care for children and families in similar contexts.

Mental health patient-reported outcomes among adolescents and young adult cancer survivors: A systematic review.

BACKGROUND: Adolescent and young adult (AYA) cancer patients and survivors face significant mental health challenges throughout their cancer journey that are different to those faced by children and older adults. Patient-reported outcome measures (PROMs) can be used to explore the experiences of AYAs, and to identify important issues and areas for potential improvement in quality of life. OBJECTIVE: We aimed to compare patient reported mental health outcomes between AYAs diagnosed with cancer and non-cancer controls. METHOD: We built on a larger systematic review of AYA cancer PROMs which searched PubMed, EMBASE, CINAHL and PsychINFO. This review identified 175 articles, which were filtered to those reporting on mental health and including a non-cancer control group. RESULTS: We identified 12 eligible studies. Seven studies (58%) found those diagnosed with cancer reported poorer mental health than the non-cancer controls. The remaining five (42%) studies found no significant difference in severity or prevalence of mental health between the AYA cancer cohort and the healthy control group. Most (83%) were cross-sectional studies, highlighting the need for further longitudinal assessment of this group throughout their journey. CONCLUSIONS: The mental health outcomes feature conflicting results and illustrate the need for larger studies to characterise discrepancies.