A Phase 1 Study of Intravenous EGFR-ErbituxEDVsMIT in Children with Solid or CNS Tumours Expressing Epidermal Growth Factor Receptor.

Background: Recurrent or refractory solid and central nervous system (CNS) tumours in paediatric patients have limited treatment options and carry a poor prognosis. The EnGeneIC Dream Vector (EDV) is a novel nanocell designed to deliver cytotoxic medication directly to the tumour. The epidermal growth factor receptor is expressed in several CNS and solid tumours and is the target for bispecific antibodies attached to the EDV.

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.

Ependymoma-like tumor with mesenchymal differentiation (ELTMD) with ZFTA:NCOA1 fusion: A diagnostic challenge.

Ependymal tumors are classified based on their location, histology, and molecular characteristics. Supratentorial ependymomas (ST-EPNs) are a group of circumscribed supratentorial gliomas, which usually have pathogenic fusions involving either zinc finger translocation associated (ZFTA) (formerly C11orf95) or YAP1. A subtype of ependymoma was recently described and labeled ependymoma-like tumors with mesenchymal differentiation (ELTMDs).

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.

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.

Feasibility of Weekly Electronic Patient- and Proxy-Reported Outcome Measures in Pediatric Oncology.

Background: Electronic patient-reported outcome measures (ePROMs) benefit adult cancer care, but their use in pediatric cancer care is limited.

Objectives: To explore the feasibility of collecting weekly ePROMs from pediatric cancer patients and/or their caregivers and to describe children's levels of symptom burden, distress, and cancer-related quality of life.

Methods: A prospective and longitudinal cohort study was undertaken at one tertiary children's cancer center.

One Hundred Times Better, at Home in Our Own Beds: Implementation of Home Intravenous Hydration After Chemotherapy in Children With Cancer.

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. 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.

Care at Your Fingertips: Codesign, Development, and Evaluation of the Oncology Hub App for Remote Symptom Management in Pediatric Oncology.

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.

Patient reported outcome measure domains and tools used among adolescents and young adults with cancer: A scoping review.

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.

Second Primary Cancers Following Cancer Among Adolescents and Young Adults in Queensland, Australia, 1982-2018.

Increased risk of second primary cancers is an unwanted consequence of cancer survivorship. While the epidemiology of second cancers is well-documented for children and older people, less is known about second cancers among adolescent and young adult (AYA) cancer survivors. Unit record data were obtained from the Queensland Cancer Register.

Routine Catheter Lock Solutions in Pediatric Cancer Care: A Pilot Randomized Controlled Trial of Heparin vs Saline.

Background: 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.

Objective: The aim of this study was to assess study feasibility, occlusive events, thrombolytic use, adverse events, and direct costs of catheter lock solutions.

Documentation of Symptoms in Children Newly Diagnosed With Cancer Highlights the Need for Routine Assessment Using Self-report.

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: The aims of this study were 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.

Coping with cancer: A qualitative study of adolescent and young adult perspectives.

Objectives: Cancer can have long-term biopsychological impacts for young people that persist for years. To promote adjustment, it is essential to understand how young people cope, yet this is relatively understudied.

Methods: This study explored the coping strategies using semi-structured interviews with 16 young people with cancer aged 15-24 years.

The Australian Youth Cancer Service: Developing and Monitoring the Activity of Nationally Coordinated Adolescent and Young Adult Cancer Care.

Adolescents and young adults (aged 15-25 years) diagnosed with cancer have unique medical and psychosocial experiences and care needs, distinct from those of paediatric and older adult patients. Since 2011, the Australian Youth Cancer Services have provided developmentally appropriate, multidisciplinary and comprehensive care to these young patients, facilitated by national service coordination and activity data collection and monitoring. This paper reports on how the Youth Cancer Services have conceptualised and delivered quality youth cancer care in four priority areas: clinical trial participation, oncofertility, psychosocial care and survivorship.

Microdeletion of 9q22.3: A patient with minimal deletion size associated with a severe phenotype.

Basal cell nevus syndrome (also known as Gorlin Syndrome; MIM109400) is an autosomal dominant disorder characterized by recurrent pathological features such as basal cell carcinomas and odontogenic keratocysts as well as skeletal abnormalities. Most affected individuals have point mutations or small insertions or deletions within the PTCH1 gene on human chromosome 9, but there are some cases with more extensive deletion of the region, usually including the neighboring FANCC and/or ERCC6L2 genes. We report a 16-year-old patient with a deletion of approximately 400,000 bases which removes only PTCH1 and some non-coding RNA genes but leaves FANCC and ERCC6L2 intact.

Cancer Incidence, Mortality, and Survival for Children, Adolescents, and Young Adults in Queensland Between 1987 and 2016.

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, this retrospective cohort study reviewed all cases of invasive cancer diagnosed in Queensland children, adolescents, and young adults (AYAs) (0-39 years) from 1987 to 2016 using the Queensland Oncology Repository (QOR). Cancers were classified according to Surveillance, Epidemiology and End Results (SEER) AYA site recode.

Treatment and Outcomes for Central Nervous System Tumors in Australian Adolescents and Young Adults: A Population-Based National Study.

While central nervous system (CNS) tumors account for only 10% of adolescent and young adult (AYA) cancers, they are the leading cause of cancer death in this age group. Using national data for Australia, we describe the presentation, treatment, and survival for AYAs diagnosed with CNS tumors. A population-based study of 15-24 year-olds diagnosed with CNS tumors (low- and high-grade glioma [LGG, HGG], medulloblastoma [MB], primitive neuroectodermal tumors [PNET], ependymoma [EP]) or other (e.

Adolescents and Young Adults with Cancer: Barriers in Access to Psychosocial Support.

Adolescents and young adults (AYAs) experience cancer at a time of significant developmental transition. Both disease and treatment impact psychosocial well-being in significant, persistent ways. While the impacts are now described, and the need for psychosocial care is increasingly well recognized, to date, the barriers in access to care have not been well delineated.

TimeSets: Temporal Sensemaking in Intelligence Analysis.

TimeSets is a temporal data visualization technique designed to reveal insights into event sets, such as all the events linked to one person or organization. In this article, we describe two TimeSets-based visual analytics tools for intelligence analysis. In the first case, TimeSets is integrated with other visual analytics tools to support open-source intelligence analysis with Twitter data, particularly the challenge of finding the right questions to ask.

Do specialist youth cancer services meet the physical, psychological and social needs of adolescents and young adults? A cross sectional study.

Purpose: To assess unmet information and service needs in adolescent and young adult cancer survivors (15-29 years) who access specialist Youth Cancer Services in Queensland, Australia.

Methods: Participants were recruited through Youth Cancer Services across Queensland and completed validated Patient Reported Outcome Measures and Patient Reported Experience Measures to assess unmet needs, symptoms and wellbeing and quality of life (QoL) through an online survey. Analysis included Spearman's correlation and t-tests.

Breast Cancer Incidence and Survival Among Young Females in Queensland, Australia.

Breast cancer is the most common cancer diagnosed among adolescent and young adult (AYA) females worldwide, but epidemiological patterns unique to this group are often obscured when results are combined with older patients. This study investigates breast cancer incidence and survival among AYA females, including differences by broad stage at diagnosis. A retrospective, population-based cohort study was conducted using de-identified data for females in Queensland, Australia, aged 15-39 diagnosed with a first primary breast cancer between 1997 and 2014 with follow-up to December 31, 2016.

Management of Sarcoma in Adolescents and Young Adults: An Australian Population-Based Study.

While overall survival (OS) for cancer in adolescents and young adults (AYA) has improved, there has been little change in AYA survival for several types of sarcomas. Using national data for Australia we describe (1) the treatment centers caring for AYA sarcoma, (2) treatments provided, and (3) survival outcomes. National population-based study assessing treatment of 15-24 year-olds diagnosed with soft tissue sarcoma (STS), bone sarcoma (BS), and Ewing family tumors (ET) between 2007 and 2012.

Clinical trial participation by adolescents and young adults with cancer: A continued cause for concern?

International data indicate that rates of clinical trial enrolment for Adolescents and Young Adults (AYAs) with cancer are markedly lower than for any other age group. This paper reviews the recent literature reporting international trends in clinical trial enrolment since 2010. Subsequently, we present the first population-based, national assessment of clinical trial enrolment for AYAs with cancer in Australia.

Queensland Youth Cancer Service: A Partnership Model to Facilitate Access to Quality Care for Young People Diagnosed with Cancer.

Global recognition of the need to improve outcomes for adolescents and young adults (AYA) with cancer has led to the development of specific oncology programs and services. In Australia, Youth Cancer Services (YCS) are now established across the country. While each service has been shaped by nationally agreed principles, program development has been influenced by local policy and geographic differences.

An extensible framework for provenance in human terrain visual analytics.

We describe and demonstrate an extensible framework that supports data exploration and provenance in the context of Human Terrain Analysis (HTA). Working closely with defence analysts we extract requirements and a list of features that characterise data analysed at the end of the HTA chain. From these, we select an appropriate non-classified data source with analogous features, and model it as a set of facets.