Overcoming challenges in conducting early phase breast cancer prevention trials: Bazedoxifene and conjugated estrogens vs waitlist control.

BACKGROUND: The combination of bazedoxifene 20 mg (BZA) and conjugated estrogens 0.45 mg (CE) marketed as Duavee® is approved for vasomotor symptom relief and osteoporosis prevention. Our pilot study suggested it had potential breast cancer risk reduction, and we proposed a multisite Phase IIB primary prevention trial assessing change in breast imaging and tissue risk biomarkers. By the time funding was acquired in February 2021, Duavee® was unavailable with an uncertain return date. A redesign was needed to salvage the study. METHODS: The basic trial design was minimally altered. Women age 45-64 at elevated risk for breast cancer with vasomotor symptoms and no menses for at least 2 months have mammography, phlebotomy, and benign breast tissue sampling before and after 6 months of intervention. However, instead of Duavee® (single pill) vs placebo, women are randomized to 6 months of BZA + CE vs Waitlist. Those initially randomized to Waitlist can receive BZA + CE after 6 months. The primary endpoint is between arm difference in change in a fully automated measure of mammographic density with blood and tissue-based secondary endpoints. OUTCOMES: Accrual initiation was delayed due to contractual difficulties surrounding BZA importation during COVID-19 and deploying a fully automated method (Volpara®) to assess the primary endpoint. To accommodate this delay, a mid-grant no cost extension along with amended eligibility requirements were employed. 61/120 participants needed were entered in the initial 27 months of accrual and 37 months of funding. Despite a late start, accrual is likely to be completed within the funding period.

Risk Stratification, Screening and Treatment of BRAF/MEK Inhibitors-Associated Cardiotoxicity.

PURPOSE OF REVIEW: In this review article we describe the cardiovascular adverse events associated with BRAF and MEK inhibitors as well as their pathophysiologic mechanisms and provide up to date guidance for risk stratified surveillance of patients on treatment and the optimal management of emergent cardiotoxicities. RECENT FINDINGS: Combination BRAF/MEK inhibition has become an established standard treatment option for patients with a wide variety of BRAF mutant haematological and solid organ cancers, its use is most commonly associated with stage three and metastatic melanoma. The introduction of these targeted drugs has significantly improved the prognosis of previously treatment resistant cancers. It is increasingly recognised that these drugs have a number of cardiovascular toxicities including left ventricular systolic dysfunction, hypertension and QTc interval prolongation. Whilst cardiotoxicity is largely reversible and manageable with medical therapy, it does limit the effective use of these highly active agents.

Pretransplant Cognitive Function and Kidney Transplant Outcomes: A Prospective Cohort Study.

Background & Hypothesis: Cognitive impairment is common in patients being evaluated for a kidney transplant (KT). The association between pretransplant cognitive function and posttransplant outcomes is unclear. Study Design: We performed a prospective cohort study to assess the association between pretransplant cognitive function and clinically relevant posttransplant outcomes. Setting and Population: In this single center study, participants from the transplant clinic were evaluated during their pretransplant clinic visits and followed prospectively. Outcomes: Our primary outcome measure was allograft function. Secondary outcomes were length of hospitalization for KT, hospital readmission within 30 and 90 days, graft loss, graft rejection within 90 days and 1 year, and mortality. Analytic Approach: We measured cognitive function with the Montreal Cognitive Assessment (MoCA) test. We assessed the association of pretransplant MoCA score with posttransplant outcomes; we used linear mixed effects models to assess the association with the change in estimated glomerular filtration rate, Poisson regression for length of hospitalization, Cox proportional hazard model for graft loss and mortality, and a logistic regression model for readmission and rejection. Results: We followed 501 participants for 2.7 ± 1.5 years. The mean age of the patients was 53 ± 14 years and the mean pretransplant MoCA score was 25 ± 3. Lower pretransplant MoCA scores did not adversely affect the primary outcome of allograft function or the secondary outcomes. Although higher MoCA scores predicted a higher decline in graft function (ß = -0.28, 95% CI: -0.55 to -0.01, P = 0.04), the effect was small and not clinically significant. Older age was associated with longer hospitalization, lower likelihood of rejection, and higher mortality. Deceased donor KT (vs living donor KT) was associated with longer hospitalization but better graft function. Longer time receiving dialysis before KT was associated with longer hospitalization. A history of diabetes mellitus was associated with higher mortality. Limitations: Single center study limiting generalizability. Conclusions: Pretransplant MoCA scores were not associated with the primary outcome of allograft function or the secondary outcomes.

Cognitive impairment (problems with memory and thinking) is common in patients with kidney disease. Cognitive impairment is associated with problems following instructions and remembering to take medications. Medical adherence is important in kidney transplant recipients, and inability to follow instructions and missed doses of immunosuppression increases the risk of rejection of the transplanted kidney. However, kidney transplantation also improves cognition. Hence, transplant centers wonder if cognitive impairment before transplant affects clinical outcomes after kidney transplant. We tried to answer this question by assessing cognitive function before transplantation and examining whether pretransplant cognitive function affects graft function, length of hospitalization, readmission after transplantation, rejection, and death. We did not find any strong link between cognitive function before transplant and these outcomes.

Estimation and inference on the partial volume under the receiver operating characteristic surface.

measures of biomarker accuracy that employ the receiver operating characteristic surface have been proposed for biomarkers that classify patients into one of three groups: healthy, benign, or aggressive disease. The volume under the receiver operating characteristic surface summarizes the overall discriminatory ability of a biomarker in such configurations, but includes cutoffs associated with clinically irrelevant true classification rates. Due to the lethal nature of pancreatic cancer, cutoffs associated with a low true classification rate for identifying patients with pancreatic cancer may be undesirable and not appropriate for use in a clinical setting. In this project, we study the properties of a more focused criterion, the partial volume under the receiver operating characteristic surface, that summarizes the diagnostic accuracy of a marker in the three-class setting for regions restricted to only those of clinical interest. We propose methods for estimation and inference on the partial volume under the receiver operating characteristic surface under parametric and non-parametric frameworks and apply these methods to the evaluation of potential biomarkers for the diagnosis of pancreatic cancer.

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.

The swallowing and speech after transoral robotic surgery-does the site impact the outcome?

Transoral robotic surgery (TORS) has been introduced to head and neck surgery as a minimally invasive techqniques to improve the functional outcomes of patients. Compare the functional outcome for swallowing and speech in each site of TORS within the head and neck. Retrospective cohort study for patients who underwent TORS within the head and neck unit. Patients were assessed at four different time points (one day, one month, six months and twelve months, respectively) with bedside/office testing. Methods of testing for swallowing assessment were by the International Dysphagia Diet Standardization Initiative (IDDSI), and speech assessments were carried out using the Understandability of Speech score (USS). Outcomes were compared to patient-specific pre-treatment baseline levels. 68 patients were included. 75% and 40% of the patients resumed normal fluid intake and normal diet immediately after surgery. 8.8% required a temporary feeding tube, with 1% required gastrostomy. There was a steep improvement in diet between 3 and 6 months. Fluid and diet consistency dropped significantly following the majority of transoral robotic surgery with more noticeable diet changes. Early deterioration in diet is temporary and manageable with a modified diet. Rapid recovery of swallowing is achieved before the first year. There is no long-term effect on speech.

Re-expansion Pulmonary Edema (REPE) Following Thoracentesis: Is Large-Volume Thoracentesis Associated with Increased Incidence of REPE?

PURPOSE: To determine the safety and efficacy associated with drainage volumes greater than 1,500 mL in a single, unilateral thoracentesis without pleural manometry measurements. MATERIALS AND METHODS: This retrospective, single-institution study included 872 patients (18 years and older) who underwent ultrasound-guided thoracentesis. Patient and procedures data were collected including demographics, number of and laterality of thoracenteses, volume and consistency of fluid removed, and whether clinical or radiologic evidence of re-expansion pulmonary edema (REPE) developed within 24 h of thoracentesis. Fisher's exact test was used to test the significance of the relationship between volume of fluid removed and evidence of REPE. RESULTS: A total of 1376 thoracenteses were performed among the patients included in the study. The mean volume of fluid removed among all procedures was 901.1 mL (SD = 641.7 mL), with 194 (14.1%) procedures involving the removal of ≥ 1,500 mL of fluid. In total, six (0.7%) patients developed signs of REPE following thoracentesis, five of which were a first-time thoracentesis. No statistically significant difference in incidence of REPE was observed between those with ≥ 1,500 mL of fluid removed compared to those with < 1,500 mL of fluid removed (p-value = 0.599). CONCLUSIONS: Large-volume thoracentesis may safely improve patients' symptoms while preventing the need for repeat procedures.

Comparing outcomes of right verse left hepatic approach percutaneous biliary drainage catheters.

Purpose: Determine if there is a difference in adverse events (AE) between right or left hepatic percutaneous biliary drain placement (PTBD) in patients with biliary strictures. Materials & methods: This retrospective study included patients with benign or malignant biliary stricture treated with PTBD at a single institution from 7/28/2004-3/30/2021. 357 patients met inclusion criteria, 77 (21.6 %) had PTBD on the left and 280 (78.4 %) on the right. AEs associated with the initial drain placement or during subsequent intervention were collected and categorized. AEs that were grouped as periprocedural included: surgery, infection, hemorrhage, and drain failure. AEs in the postprocedural group included: chills, catheter displacement, cholangitis, biliary stones, drain malfunction, fever resolving without treatment, and pericatheter leakage. Surgery was considered a major AE and the remaining AEs were categorized as minor. Statistical analyses were performed using Logistic Regression Analysis and p-values less than 0.05 were considered statistically significant. Results: Overall, there was no statistically significant difference in AEs between right and left drains in the periprocedural and postprocedural period (p = 0.832, OR = 0.95 and p = 0.808, OR = 0.93 respectively). When analyzing minor AEs individually, only cholangitis occurred at a higher rate on the right side (p = 0.033, OR = 0.43). There was no statistical difference in the rate of major AEs in the periprocedural period between left and right drains (p = 0.311, OR = 1.37). Conclusion: Current literature is equivocal when comparing right versus left percutaneous biliary drains. This analysis describes no statistically significant difference in AEs between right and left hepatobiliary drains aside from slightly higher incidence of cholangitis for right sided drains.

A pilot study to assess blood-brain barrier permeability in long COVID.

The etiology of brain fog associated with long COVID is not clear. Based on some preliminary work, disruption of the blood-brain barrier has been hypothesized, but has not been tested in patients with long COVID. In this case-control pilot study, we evaluated blood-brain barrier permeability in patients with long COVID and subjective memory loss or brain fog. We used 99 m Technetium diethylenetriaminepentaacetic acid single-photon emission computed tomography (SPECT) to measure blood-brain barrier permeability and a telephone assessment (T-cog) to measure cognitive function. The blood-brain barrier permeability was quantified via SPECT standard uptake value (SUV). We assessed the blood-brain barrier permeability in 14 long COVID patients and 10 control participants without subjective cognitive impairment or brain fog. Participants in the two groups were similar in age. The long COVID group had more comorbidities compared to the control group. There was no difference in the SUVs in the long COVID (0.22 ± 0.12) vs the control (0.17 ± 0.04) group. There was no difference in the T-cog results in the two groups either. We found no evidence of a difference in blood-brain permeability in patients with long COVID when compared to controls without a known history of COVID-19 infection. Larger studies are needed to confirm these findings.

Cost effectiveness of pembrolizumab plus lenvatinib compared with chemotherapy for treating previously treated advanced endometrial cancer in Sweden.

OBJECTIVE: Pembrolizumab plus lenvatinib was recently approved for the treatment of advanced or recurrent endometrial carcinoma in women with disease progression on or following prior treatment with a platinum­containing therapy in any setting, and who are not candidates for curative surgery or radiation (KEYNOTE-775/Study-309; NCT03517449). The objective was to assess the cost effectiveness of pembrolizumab plus lenvatinib compared with chemotherapy from a Swedish healthcare perspective. MATERIALS AND METHODS: A lifetime partitioned-survival model with three health states (progression free, progressed disease, death) was constructed. Chemotherapy was represented by paclitaxel or doxorubicin. Overall survival, progression-free survival, time on treatment, and utility data were obtained from KEYNOTE-775 (database lock: March 1, 2022). Costs (in 2020 Swedish Krona [SEK]) included drug acquisition and administration, health state, end of life, adverse event management, subsequent treatment, and societal (scenario analysis). Outcomes were calculated as quality-adjusted life-years (QALY) and life-years. Model results were presented as incremental cost-effectiveness ratios for all-comers, patients with proficient mismatch repair tumors, and deficient mismatch repair tumors. Deterministic and probabilistic sensitivity analyses were conducted. RESULTS: Pembrolizumab plus lenvatinib is a cost-effective treatment when compared with chemotherapy, with estimated deterministic and probabilistic incremental cost-effectiveness ratios of SEK 795,712 and 819,757 per QALY gained. Pembrolizumab plus lenvatinib was associated with a large incremental QALY and life-year gain per person versus chemotherapy over the model time horizon (1.49 and 1.76). LIMITATIONS: Time-to-event data were incomplete and semiparametric and parametric curves were utilized for lifetime extrapolation. Willingness-to-pay thresholds, costs, and utility weights vary by country, which would vary the treatment's cost effectiveness in different countries. CONCLUSIONS: This partitioned survival analysis suggests that pembrolizumab plus lenvatinib is cost effective compared with chemotherapy in Sweden for women with advanced or recurrent endometrial carcinoma following previous systemic therapy. Results were robust to mismatch repair status and to changes in parameters/assumptions.

Design of a pragmatic randomized implementation effectiveness trial testing a health system wide hypertension program for older adults.

Hypertension control remains poor. Multiple barriers at the level of patients, providers, and health systems interfere with implementation of hypertension guidelines and effective lowering of BP. Some strategies such as self-measured blood pressure (SMBP) and remote management by pharmacists are safe and effectively lower BP but have not been effectively implemented. In this study, we combine such evidence-based strategies to build a remote hypertension program and test its effectiveness and implementation in large health systems. This randomized, controlled, pragmatic type I hybrid implementation effectiveness trial will examine the virtual collaborative care clinic (vCCC), a hypertension program that integrates automated patient identification, SMBP, remote BP monitoring by trained health system pharmacists, and frequent patient-provider communication. We will randomize 1000 patients with uncontrolled hypertension from two large health systems in a 1:1 ratio to either vCCC or control (usual care with education) groups for a 2-year intervention. Outcome measures including BP measurements, cognitive function, and a symptom checklist will be completed during study visits. Other outcome measures of cardiovascular events, mortality, and health care utilization will be assessed using Medicare data. For the primary outcome of proportion achieving BP control (defined as systolic BP < 130 mmHg) in the two groups, we will use a generalized linear mixed model analysis. Implementation outcomes include acceptability and feasibility of the program. This study will guide implementation of a hypertension program within large health systems to effectively lower BP.

Cost-effectiveness of pembrolizumab for previously treated MSI-H/dMMR solid tumours in the UK.

OBJECTIVES: Patients with previously treated microsatellite instability-high (MSI-H)/mismatch repair deficient (dMMR) tumours have limited chemotherapeutic treatment options. Pembrolizumab received approval from the EMA in 2022 for the treatment of colorectal, endometrial, gastric, small intestine, and biliary MSI-H/dMMR tumour types. This approval was supported by data from the KEYNOTE-164 and KEYNOTE-158 clinical trials. This study evaluated the cost-effectiveness of pembrolizumab compared with standard of care (SoC) for previously treated MSI-H/dMMR solid tumours in line with the approved EMA label from a UK healthcare payer perspective. METHODS: A multi-tumour partitioned survival model was built consisting of pre-progression, progressed disease, and dead health states. Pembrolizumab survival outcomes were extrapolated using Bayesian hierarchical models (BHMs) fitted to pooled data from KEYNOTE-164 and KEYNOTE-158. Comparator outcomes were informed by published sources. Tumour sites were modelled independently and then combined, weighted by tumour site distribution. A SoC comparator was used to formulate the overall cost-effectiveness result with pembrolizumab as the intervention. SoC comprised a weighted average of the comparators by tumour site based on market share. Drug acquisition, administration, adverse events, monitoring, subsequent treatment, end-of-life costs, and testing costs were included. Sensitivity and scenario analyses were performed, including modelling pembrolizumab efficacy using standard parametric survival models. RESULTS: Pembrolizumab, at list price, was associated with £129,469 in total costs, 8.30 LYs, and 3.88 QALYs across the pooled tumour sites. SoC was associated with £28,222 in total costs, 1.14 LYs, and 0.72 QALYs across the pooled tumour sites. This yields an incremental cost-effectiveness ratio (ICER) of £32,085 per QALY. Results were robust to sensitivity and scenario analyses. CONCLUSIONS: This model demonstrates pembrolizumab provides a valuable new alternative therapy for UK patients with MSH-H/dMMR cancer at the cost of £32,085 per QALY, with confidential discounts anticipated to improve cost-effectiveness further.

Management of infliximab refractory immune checkpoint inhibitor gastrointestinal toxicity: a multicenter case series.

BACKGROUND: Immune checkpoint inhibitor (ICI) gastrointestinal toxicity (gastritis, enteritis, colitis) is a major cause of morbidity and treatment-related death. Guidelines agree steroid-refractory cases warrant infliximab, however best management of infliximab-refractory ICI gastrointestinal toxicity (IRIGItox) is unknown. METHODS: We conducted an international multicenter retrospective case series. IRIGItox was defined as failure of symptom resolution ≤grade 1 (Common Terminology Criteria for Adverse Events V.5.0) following ≥2 infliximab doses or failure of symptom resolution ≤grade 2 after one dose. Data were extracted regarding demographics, steroid use, response to treatment, and survival outcomes. Toxicity was graded at symptom onset and time of infliximab failure. Efficacy of infliximab refractory therapy was assessed by symptom resolution, time to resolution and steroid wean duration. Survival outcomes were examined based on immunosuppressive therapy received. RESULTS: 78 patients were identified: median age 60 years; 56% men; majority melanoma (N=70, 90%); 60 (77%) received anti-cytotoxic T-lymphocyte-associated protein 4 alone or in combination with anti-programmed cell death protein-1 and most had colitis (N=74, 95%). 106 post-infliximab treatments were given: 31 calcineurin inhibitors (CNIs); 27 antimetabolites (mycophenolate, azathioprine); 16 non-systemic immunomodulatory agents (eg, mesalazine or budesonide); 15 vedolizumab; 5 other biologics (anti-interleukin-12/23, 16, Janus kinase inhibitors) and 7 interventional procedures (including colectomy); 5 did not receive post-infliximab therapy. Symptom resolution was achieved in most (N=23/31, 74%) patients treated with CNIs; 12/27 (44%) with antimetabolites; 7/16 (44%) with non-systemic immunomodulation, 8/15 (53%) with vedolizumab and 5/7 (71%) with interventional procedures. No non-vedolizumab biologics resulted in toxicity resolution. CNIs had the shortest time to symptom resolution (12 days) and steroid wean (43 days); however, were associated with poorer event-free survival (6.3 months) and overall survival (26.8 months) than other agents. Conversely, vedolizumab had the longest time to toxicity resolution and steroid wean, 66 and 124 days, but most favorable survival data: EFS 24.5 months; median OS not reached. Six death occurred (three due to IRIGItox or management of toxicity; three with persisting IRIGItox and progressive disease). CONCLUSIONS: IRIGItox causes major morbidity and mortality. Management is heterogeneous. CNIs appear most likely to result in toxicity resolution in the shortest time period, however, are associated with poorer oncological outcomes in contrast to vedolizumab.

"Make it better for the women and babies who come after me": Findings from women in Australia completing the international Babies Born Better survey.

BACKGROUND: Woman-centered maternity service delivery is endorsed by Australian federal health policy. Despite this, little evaluation of maternity care is conducted through the lens of women. We examined the responses of women birthing in Australia to the international Babies Born Better 2018 (Version 2) open-response survey. METHODS: An online international survey was distributed primarily by means of social media for women who had given birth in the last 5 years. In addition to closed-ended questions to describe the sample, a series of open-ended questions recorded women's experiences and satisfaction with their maternity care and place of birth. RESULTS: Of 1249 women who reported birthing their most recent baby in Australia and speaking English, 84% responded to at least one open-ended evaluation question. We thematically analyzed the data to identify three related themes of safety, choice, and respect for women. Women's experiences of these were closely tied to their model of care; those birthing at home with a private midwife more so reported positive experiences than those discussing obstetric care or, to a lesser extent, midwifery-led care in a hospital. There was a strong preference and need for (1) access to affordable care with a known practitioner from early pregnancy to postpartum, and (2) individualized care with the removal of restrictive hospital policies not aligned with woman-centered practice. DISCUSSION: This is the first Australian national study of women's maternity experiences and evaluations. Consistent with previous state-based research, women birthing in Australia continue to report maternity "care" that is physically and emotionally harmful. They also stated a need to address the psychosocial aspects of becoming a mother, in addition to the biological ones. Women and other birthing people must be at the center of defining quality maternity health service delivery, and services must be accountable for preventing and addressing harm, as defined by all birthing people.

Safety of non-cuffed tunneled central venous catheters in adults with cystic fibrosis.

BACKGROUND: Peripherally inserted central catheters (PICCs) are the most common route of intravenous (I.V.) access for treatment of cystic fibrosis (CF) pulmonary exacerbations, but repeated PICC placement can result in upper extremity peripheral venous stenosis. Once peripheral stenosis develops, a non-cuffed tunneled central venous catheter (NcTCVC) is an alternative route for IV access. While these are regularly used at some CF centers, the safety and complication rate compared to PICCs in adults with CF has not been reported. This study aims to describe the safety of NcTCVCs in adults with CF. METHODS: A retrospective cohort study was performed at a CF Foundation accredited institution including adults with CF who received NcTCVCs in interventional radiology from 7/19/2007 to 3/09/2020. Complications analyzed included catheter related deep venous thrombosis (DVT), central line associated blood stream infection (CLABSI), and catheter related central venous stenosis. Complications were considered attributable if they occurred while the catheter was in place or within 30 days of catheter removal. RESULTS: During the study duration, 386 NcTCVCs were placed in 60 unique patients (55 % female) with a mean of 6.4 catheters per patient. Majority of NcTCVCs placed were 4 French (61.4 %). Average duration of indwelling NcTCVC was 16.2 days. No patients demonstrated catheter attributable symptomatic DVT. The incidence of DVT, CLABSI, and central venous stenosis was 0 (0 %), 4 (1 %), and 1 (0.3 %), respectively. CONCLUSIONS: Many adults with CF have required insertion of numerous PICCs for the treatment of recurrent pulmonary exacerbations. In those adults that develop PICC-associated peripheral vein stenosis precluding PICC placement, these results indicate NcTCVCs are a safe alternative.

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.