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.

Promise and Perils of Precision Oncology for Patients With Pediatric and Young Adult Sarcomas.

The completion of multiple national pediatric precision oncology platform trials and the incorporation of standardized molecular profiling into the diagnostic care of pediatric and young adult patients with sarcomas have proven the feasibility and potential of the approach. In this work, we explore the current state of the art of precision oncology for pediatric and young adults with sarcoma. We highlight important lessons learned and the challenges that should be addressed in the next generation of trials.

Quitting intentions and behaviours among young Australian e-cigarette users.

Background And Aims: With the prevalence of e-cigarette use among Australian youth increasing significantly in recent years, greater attention is being paid to encouraging and supporting cessation. However, research to inform such efforts is lacking. The present study sought to (i) measure desire to quit e-cigarette use and actual quitting attempts among young Australians and (ii) explore correlates of quitting-related cognitions and behaviours.

The feasibility and acceptability of collecting psychosocial outcome measures embedded within a precision medicine trial for childhood cancer.

Background: Patient-reported outcomes measures (PROMs) are increasingly being collected within cancer clinical trials, yet limited literature on the feasibility and acceptability of doing so.

Methods: We collected parent-proxy and adolescent (≥12 years old) PROMs through a longitudinal, psychosocial sub-study ('PRISM-Impact') embedded in a precision medicine trial for children with poor prognosis cancer ('PRISM'). We report on feasibility (response, participation, and attrition rates; follow-up and responding to elevated distress) and acceptability (parents' perceived benefit/burden of participation; and impact on decision to participate in PRISM) of PRISM-Impact.

It provides families with other avenues for treatment when there are no other options Surgeons' perspectives of being part of a precision medicine trial for poor prognosis paediatric cancer patients: A short report.

Objective: Precision medicine is transforming cancer treatment, yet the perspectives of surgeons who often play a critical role in the delivery of precision medicine remain understudied.

Methods: We conducted semi-structured interviews with 13 surgeons involved in a precision medicine trial for children with poor prognosis cancer. We explored knowledge of genetics, confidence with somatic and germline results, ratings of benefit to stakeholders and willingness to undertake surgical procedures.

'High hopes for treatment': Australian stakeholder perspectives of the clinical translation of advanced neurotherapeutics for rare neurological diseases.

Introduction: Advanced therapies offer unprecedented opportunities for treating rare neurological disorders (RNDs) in children. However, health literacy, perceptions and understanding of novel therapies need elucidation across the RND community. This study explored healthcare professionals' and carers' perspectives of advanced therapies in childhood-onset RNDs.

Australian Headache Epidemiology Data (AHEAD): a pilot study to assess sampling and engagement methodology for a nationwide population-based survey.

Background: There are no robust population-based Australian data on prevalence and attributed burden of migraine and medication-overuse headache (MOH) data. In this pilot cross-sectional study, we aimed to capture the participation rate, preferred response method, and acceptability of self-report questionnaires to inform the conduct of a future nationwide migraine/MOH epidemiological study.

Methods: We developed a self-report questionnaire, available in hard-copy and online, including modules from the Headache-Attributed Restriction, Disability, Social Handicap and Impaired Participation (HARDSHIP) questionnaire, the Eq.

Co-design of a paediatric oncology medicines database (ProCure) to support complex care provision for children with a hard-to-treat cancer.

Objectives: Paediatric oncologists often encounter challenges when seeking compassionate access to off-label therapies for their patients. This study employed implementation science and co-design techniques to develop the ProCure medicines database, with the goal of streamlining the application process and addressing identified barriers in paediatric oncology.

Methods: This study utilised an exploratory qualitative research design.

Psychological wellbeing among parents of a child living with a serious chronic illness: A cross-sectional survey study.

Parents of a child with a chronic illness can experience greater distress than the average population, yet little is understood about differences between illness groups. This cross-sectional survey study aimed to compare parents' psychological distress and perceived wellbeing across five chronic illnesses. Parents from one Australian pediatric hospital completed the Kessler Psychological Distress Scale and seven purpose-designed items about their wellbeing.

Exploring childhood cancer survivor, parent, healthcare and community professionals' experiences of, and priorities for, using digital health to engage in physical activity: a mixed methods study.

Purpose: Digital health interventions provide an innovative way to engage childhood cancer survivors in physical activity, yet few studies have explored the priorities of key stakeholders regarding using digital health. We aimed to investigate survivor, parent, and healthcare and community professional (HCP) experiences, priorities, and perceived importance of using digital health to promote physical activity behaviours for survivors.

Methods: Participants rated the importance of digital health features to promote physical activity in a survey.

The lived experience of people affected by cancer: A global cross-sectional survey protocol.

A diagnosis of cancer impacts the person's physical and mental health and the psychosocial and financial health of their caregivers. While data on the experience of living with cancer is available, there is a dearth of data from persons in low- and middle-income countries (LMICs). The perspectives of other impacted individuals also remain understudied (e.

The psychological impact of genetic testing in childhood cancer: A systematic review.

Objective: Cancer predisposition syndromes are being more frequently recognized in the etiology of pediatric oncology and genetic-related technologies are evolving rapidly, leading to an increasing availability of genetic testing for families. This systematic review assessed the psychological impact of genetic testing on children and parents in the context of childhood cancer.

Methods: Searches were performed using three databases (Web of Science, Pubmed and Embase) to identify relevant empirical studies.

Pilot testing "Teach Ted": A digital application for children undergoing blood tests and their parents.

Objective: In this pilot study, we evaluated the acceptability and preliminary evidence of the impact of a new educational mobile application, "Teach Ted", for children undergoing blood tests.

Methods: Parents of children (4-10 years) completed questionnaires on anxiety and pain before their child had a blood test, and after using Teach Ted and receiving their blood test. Health professionals at each patient's blood test (e.

Communicating with families of young people with hard-to-treat cancers: Healthcare professionals' perspectives on challenges, skills, and training.

Objectives: Hard-to-treat childhood cancers are those where standard treatment options do not exist and the prognosis is poor. Healthcare professionals (HCPs) are responsible for communicating with families about prognosis and complex experimental treatments. We aimed to identify HCPs' key challenges and skills required when communicating with families about hard-to-treat cancers and their perceptions of communication-related training.

Gastroenterology services for patients with Cystic Fibrosis across Australia and New Zealand: a multi-stakeholder assessment of patients' and professionals' perspectives.

Introduction: Gastrointestinal (GI) symptoms are common in individuals with Cystic Fibrosis (CF). International research has highlighted that GI care for this group of patients is lacking. Gastroenterology services to CF clinics across Australasia are yet to be examined.

Surgeon reported measures of stress and anxiety prior to and after elective gynecological surgery.

Introduction: Performing surgical procedures is a recognized source of stress for surgeons. Vocational stress is an important contributor to performance, patient care, and burnout with dispositional and environmental factors contributing. Accurately assessing surgeon stress is critical to measuring effectiveness of stress reduction programs.

Patterns of physical activity and sedentary behavior in child and adolescent cancer survivors assessed using wrist accelerometry: A cluster analysis approach.

Physical activity levels among childhood cancer survivors are typically quantified as a total amount using time spent in various intensities. Yet, most analyses do not consider the transitory nature of children's behaviors and a more detailed approach could provide complimentary information. We aimed to explore various behavior profiles of survivors' daily and hourly physical activity patterns.