Recapturing Life: Virtual Peer-Based Psychological Support for Adolescent and Young Adult Cancer Survivors Delivered in the Community.

Adolescent and young adult (AYA) cancer survivors have unique psychological needs and require tailored support, as they transition from hospital settings following cancer treatment. This study aimed to evaluate the safety and clinical effectiveness of the online "Recapture Life" program to improve AYA aged survivors' psychological adjustment in early cancer survivorship. The intervention was delivered in community settings, by trained psychosocial staff at partnering cancer-support organizations.

The Rhythm of Connection: Describing the Heartbeats Intervention for Patients and Families Receiving Paediatric Palliative Care.

Music therapy in paediatric palliative care offers a unique opportunity for emotional support, legacy creation, and therapeutic connection for children and their families. This paper describes the Heartbeats Intervention, as delivered by a paediatric palliative care music therapist at Sydney Children's Hospital Australia. This intervention involves recording and creatively integrating the heartbeats of children and family members into personalised musical compositions.

Bridging the Gap: Embedding Psychosocial Oncology Research into Comprehensive Cancer Care for Children and Young People.

The National Cancer Institute designated models of comprehensive cancer care centres endeavour to enable the delivery of high-quality, holistic cancer care, informed by research evidence across the cancer care trajectory. These comprehensive cancer centers have typically been adult-oncology-focused, leaving an important gap and opportunity to consider what a model of comprehensive cancer care might look like for children and young people. With the advent of the opening of the first comprehensive children's cancer center in Australia and the southern hemisphere, this commentary considers the important role that psychosocial oncology needs to play in driving high-quality, person-centered comprehensive cancer care for all.

Risky, protective, and screening health behaviours among childhood cancer survivors: A cross-sectional survey in Australia and New Zealand.

Purpose: Childhood cancer survivors are at risk of late effects. Engaging in health behaviours may reduce this risk. We aimed to investigate engagement in risky (alcohol consumption, smoking), protective (sun protection, physical activity, dental hygiene), and screening (cervical screening, skin examinations) behaviours between survivors and an age- and sex-matched control group.

How Classmates Experience Visiting Their Hospitalised Peer During Cancer Treatment: A RESPECT Study.

Aim: To explore how classmate 'ambassadors' experienced and engaged in social interaction while visiting a hospitalised peer undergoing cancer treatment.

Design: A phenomenological-hermeneutic inspired exploratory study.

Methods: Using on-the-go semi-structured interviews and participant observations from January to December 2023 in Denmark, we included 27 school-aged ambassadors aged 6-18 years old; 18 participated in pre- and post-visit interviews, while all 27 took part in observations during 19 visits.

Clinical Practice Guideline for the Management of Communication and Swallowing in Children Diagnosed With Childhood Brain Tumor or Leukemia.

Childhood brain tumor and leukemia (CBTL) and their treatments can have negative effects on development, including communication and swallowing. Clinical practice guideline recommendations for managing communication and swallowing difficulties in children diagnosed with CBTL were informed by (i) a systematic review using the GRADE approach to rate certainty of evidence; (ii) GRADE Evidence to Decision Framework involving an international panel of experts; and (iii) a Health Professional and Consumer survey. To improve outcomes and quality of life, children with CBLT should have access to communication and swallowing assessment and intervention from cancer diagnosis, throughout and after treatment, and across survivorship.

Development of a World Health Organization international survey assessing the lived experience of people affected by cancer: outcomes from pilot testing, user feedback, and survey revision.

Purpose: Assessing differences between lived experiences of people affected by cancer internationally facilitates direction of international health policies and standards. The study piloted, on behalf of the World Health Organization (WHO), a global survey assessing the lived experience of people affected by cancer. We aimed to determine (1) the acceptability of the survey and (2) the survey's capacity to capture a globally representative sample of people diagnosed with cancer.

Psychosocial Outcomes in Parents of Children with Acute Lymphoblastic Leukaemia in Australia and New Zealand Through and Beyond Treatment.

Parents of children with acute lymphoblastic leukaemia (ALL) experience emotional distress throughout their child's treatment course. This study describes the psychological experience of Australian and New Zealand parents of children diagnosed with ALL. This prospective, longitudinal study assessed distress, anxiety, depression, anger and the need for help in parents of children with newly diagnosed ALL across eight sites between October 2018 and November 2022.

Whatever It Takes: Parents' Perspectives of Patient-Derived Xenograft Mouse Models for Poor Prognosis Childhood Cancer.

Purpose: Patient-derived xenograft (PDX) models are used in precision medicine to identify treatments that may be more effective for an individual patient's molecular tumor profile. We explored parents' perspectives of using personalized PDX mouse models to potentially guide treatment recommendations for their child enrolled in Precision Medicine for Children with Cancer (PRISM), a precision medicine trial for poor prognosis cancer.

Methods: We report on interview data collected from a mixed-methods study examining families' experiences of PRISM.

The PreGen Research Program: Implementing Prenatal Genomic Testing in Australia-A Commentary.

Prenatal genomic sequencing, which can provide a significantly increased diagnostic rate for fetal structural anomaly (FSA) compared with karyotype and microarray, is not available uniformly across Australia. PreGen, a 5-year translational research program, has identified significant barriers to implementation including access to funding, the availability of genomic testing, access to termination of pregnancy services and the availability of specialist genomic centres. A federal item number for prenatal genomic testing would increase equitable test availability and reduce delays to diagnoses by making them in pregnancy whilst removing the need for low-yield diagnostic interventions and enabling personalised patient management and family support.

Delivering Trio Germline Whole Genome Sequencing to Patients Newly Diagnosed With Childhood Cancer: Healthcare Professionals' Perspectives of the PREDICT Study.

Background: Germline genomic sequencing (GS) is increasingly offered to children with cancer. To optimize integration into routine care, assessment of implementation barriers and a better understanding of healthcare professionals' perspectives and experiences are needed.

Methods: Healthcare professionals delivered trio germline GS to newly diagnosed pediatric and adolescent patients with cancer via the PREDICT completed questionnaires with qualitative and quantitative items.

Building capacity to treat childhood cancer in Papua New Guinea: 'It's a multidisciplinary village'.

Childhood cancer outcomes in low- and middle-income countries are impacted by the presentation of advanced disease and limited diagnostic and treatment resources. Papua New Guinea is highly populated with significant health coverage and workforce difficulties, in addition to unique geographical and political challenges affecting childhood cancer care. With improvements in communicable disease management, childhood cancer care has become an emerging need, managed by a dedicated service in Port Moresby General Hospital (PMGH).

Family-Level Impact of Germline Genetic Testing in Childhood Cancer: A Multi Family Member Interview Analysis.

Germline genetic testing is increasingly being integrated into pediatric oncology and a large number of families are interested. Current research on the psychological impact of germline genetic testing is limited by a main focus on individual outcomes in parents or children and little is known about its impact at the family level. Our study addresses that limitation by exploring parents' lived experiences of how their family-as a whole-is affected by germline genetic testing for cancer predisposition.

The Lived Experience of Childhood Cancer Survivors and Their Parents: A Multi-National Study of Access to Survivorship Care and Information and Support Needs.

Introduction: Lifelong follow-up care for childhood cancer survivors (CCS) is recommended and ideally involves both medical and psychosocial care. It is important for CCS and their families to be adequately informed about what to expect after cancer treatment completion to ensure they receive appropriate care. This study aimed to describe patterns of access to survivorship care among a multi-national sample, as well as examine unmet information and support needs, for CCS and their parents.

Survivorship care plan utilization in Australia and New Zealand: survivors', parents' and healthcare providers' perspectives.

Purpose: As part of survivorship care, many health authorities recommend survivorship care plans (SCPs). The aim of this study was to understand survivors' SCP receipt and use, clinical/demographic factors associated with use, and providers' SCP practices.

Methods: We surveyed Australian and New Zealand survivors of adult and childhood cancer (including parent proxies for survivors aged < 16 years).

A scoping review of participant reported outcome measures assessed during live and simulated surgical procedures.

Background: The study aims to describe current use of participant-reported outcome measures (PROM) to assess stress in surgeons that may impact patient and surgeon wellbeing.

Methods: Medline, Embase, Cochrane library, and clinical trial registries were searched. Articles reporting PROM of stress in live or simulated surgery were included.

Alignment of Palliative Care Service Structure and Standards of Care for Adolescents and Young Adults with Cancer: An International Survey of Clinical Practice.

Access to timely, age-appropriate palliative care services and end-of-life communication are two standards of care for adolescents and young adults (AYAs) living with cancer where cure is uncertain or unlikely. Health professionals' capacity to facilitate these standards is critical. This study aimed to understand AYA oncology health professionals' experienced practices in, and barriers to, delivering these standards of care across palliative care and end-of-life communication in Australia, New Zealand, and the United Kingdom (UK).

Illness-related communication between siblings and parents of children with chronic illness and life-limiting conditions: A qualitative analysis.

Background: Having a brother or sister who has a chronic illness (lasting >6 months and requiring long-term care) or life-limiting condition (LLC; where cure is highly unlikely and the child is expected to die) has major impacts on siblings. Parent-sibling illness-related communication may contribute to siblings' capacity to cope.

Objectives: In this study, we aimed to explore parent-sibling illness-related communication, from the perspectives of parents and siblings.

Cancer genetic counseling via telegenetics and telephone: A qualitative study exploring the experience of patients and genetic counselors in an Australian cancer genetics context.

The demand for direct-to-patient (DTP) telegenetics (genetics services delivered via videoconferencing) in genetic counseling practice has rapidly increased, particularly since the COVID-19 pandemic. Recent telegenetics literature is mostly quantitative and not in the Australian context. A qualitative interview study was conducted to address this gap.

Surgeon stress, anxiety, and workload: a descriptive study of participant reported responses to fundamentals of laparoscopic surgery exercises.

Background: Stress while operating is an important contributor to surgeon health and burnout. Measuring stress is key to improving surgeon and patient outcomes, however biological responses to stress during surgery are variable and difficult to interpret. Participant reported measures of stress have been suggested as an alternative, but the most appropriate measure has not been defined.

Online Ambassador Visits for Hospitalized Children With Cancer: Qualitative Evaluation of Implementation.

Background: Children with cancer or cancer-like disease risk treatment-related isolation, which can negatively impact their peer relationships and social competencies and exacerbate their loneliness. During the COVID-19 pandemic, increased online socialization became the new normal imposed by national isolation guidelines. To adhere to the treatment-related isolation guidelines, children with cancer were offered online classmate "ambassador" visits during hospitalization.

When genetics and pediatric cancer collide: Understanding and optimizing families' experiences.

Background: Advances in our understanding of the genetic basis of childhood cancer, including primary central nervous system cancers, are improving the diagnosis, treatment, and clinical management of pediatric patients. To effectively translate scientific breakthroughs into enhanced clinical care, it is essential we understand and learn from the experiences of patients, families, and health professionals.

Methods: This report summarizes findings from 4 Australian psychosocial substudies exploring the perspectives of patients, parents, clinicians, and scientists participating in research related to childhood cancer genetics.

Barriers to access of precision guided therapies for children with high-risk cancer.

Introduction: Accessing compassionate access schemes to obtain novel therapeutic agents for children with hard-to-treat cancers can be fraught with challenges such as regulatory barriers and limited resources. This study aimed to explore clinician perspectives on the barriers, impacts and ethical considerations of accessing novel therapeutic agents within the context of a paediatric oncology precision medicine trial.

Methods: We gathered data from 37 semi-structured interviews with paediatric oncologists participating in the PRecISion Medicine for Children with Cancer (PRISM) study, a precision medicine clinical trial in Australia.