A5086407457- BRCA gene mutations in cancer
- Ethics and Legal Issues in Pediatric Healthcare
- Cancer-related Molecular Pathways
- Family Support in Illness
- Epigenetics and DNA Methylation
- Ethics in Clinical Research
- Childhood Cancer Survivors' Quality of Life
- Genomics and Rare Diseases
- Nutrition, Genetics, and Disease
- Palliative Care and End-of-Life Issues
- Health Systems, Economic Evaluations, Quality of Life
- Mental Health and Patient Involvement
- Service and Product Innovation
- Genetics and Neurodevelopmental Disorders
- Cardiac, Anesthesia and Surgical Outcomes
- Patient-Provider Communication in Healthcare
- Health, Environment, Cognitive Aging
- Prenatal Screening and Diagnostics
- Cancer Risks and Factors
- Telomeres, Telomerase, and Senescence
- Hip and Femur Fractures
- Global Cancer Incidence and Screening
- PARP inhibition in cancer therapy
- Enhanced Recovery After Surgery
- Heme Oxygenase-1 and Carbon Monoxide
Peter MacCallum Cancer Centre
2016-2025
The University of Melbourne
2016-2025
National Cancer Institute
2022-2024
National Institutes of Health
2024
Division of Cancer Epidemiology and Genetics
2022-2024
University of Pennsylvania
2024
The Royal Melbourne Hospital
2021-2022
Murdoch Children's Research Institute
2018-2021
Epsom Hospital
2018
Australian National University
2016
ABSTRACT Background Rapid autopsy offers a tantalising opportunity to better characterise metastatic disease and determine how malignancies evade treatment. The CASCADE (CAncer tiSsue Collection After DEath) rapid program at the Peter MacCallum Cancer Centre, established in 2012, has conducted more than 100 autopsies. experiences of clinicians researchers who conduct this can offer insight into unique be sensitively their involvement impacts them personally professionally. Purpose To explore...
Ethical issues arise for genetic counselors when a client fails to disclose diagnosis of hereditary disease family: they must consider the rights individual privacy and confidentiality as well family know their risk. Although considerable work has addressed non-disclosure from client's perspective, there is lack qualitative research into how address this issue in practice. In study, approach was taken investigate whether Australia use relational encourage disclosure information breast...
As cancer therapies increase in their complexity, effective communication among patients, physicians, and research staff is critical for optimal clinical trial management. Currently, we understand little about on-trial practices patient experiences over time. This mixed-method study explored of participating a drug at different time points, focussing on with staff.Patients enrolled trials conducted the Parkville Cancer Clinical Trials Unit were invited to complete tailored online survey...
Purpose This study explored the genetic testing experiences of adolescents and young adults (AYAs; aged 15–39 years) with, or at 50% risk of, an early onset cancer predisposition syndrome: Li–Fraumeni syndrome (LFS).Design We used interpretive description conducted semi-structured interviews with 30 AYAs (mean age 25.5 years): 26 LFS four risk. Findings were developed using team-based, inductive thematic analysis.Findings Participants reported uptake to reduce uncertainty about their gene...
Consumer engagement improves research quality and relevance but can be difficult to implement. This study aimed explore the motivations understand barriers, if any, experienced by consumers before when partnering with cancer teams. Semi-structured interviews were conducted results analysed thematically. Two groups recruited: who members of consumer registry patients did not have previous experience being a in researcher partnership. Twenty-one total 22 participants aged between 26 74 years....
Abstract Individuals with inherited cancer syndromes, such as Li-Fraumeni syndrome (LFS), may be motivated to adopt health-protective behaviors, eating more fruits and vegetables increasing physical activity. Examining these health behaviors among young people high lifetime genetic risk provide important insights guide future behavioral interventions that aim improve health-related quality of life (HRQOL). We used a self-regulatory framework investigate relationships diet activity...
Discussing population-based cancer risk and screening is common in general practice. Patients with an inherited syndrome, however, may need more nuanced discussions. Li-Fraumeni syndrome (LFS) a rare, that affects many organ systems from birth requires intensive, whole-body management. The aim of this study was to explore the management experiences young people (aged 15-39 years) with, or at of, LFS.Using interpretive description design, semi-structured interviews were conducted diagnosed...
Abstract Li–Fraumeni syndrome (LFS), a rare cancer caused by pathogenic germline variants in TP53 , has serious implications for adolescents and young adults (AYAs; aged 15–39 years). The early‐onset multi‐organ risk associated with LFS means health professionals must concurrently contend the developmental needs of individuals who are diagnosed from age, recent changes practice due to advances whole‐body surveillance. To help understand how current meets AYAs with, or at of, LFS, we...
1. Carbon monoxide and autogenous red cells labeled with Cr51 were administered simultaneously to dogs rabbits; tissue homogenates blood then analyzed for radioactivity CO content. 2. Small amounts of accumulated regularly in spleen lung and, when the delivered via portal vein, liver. No sequestration occurred brain, kidneys or extremities. 3. Prolonged storage tagged cells, particularly suspended saline rather than plasma, increased loss from vitro by early after injection into their...
Background Research identifying and returning clinically actionable germline variants offer a new avenue of access to genetic information. The psychosocial clinical outcomes for women who have received this ‘genome-first care’ delivering hereditary breast ovarian cancer risk information outside genetics services are unknown. Methods: An exploratory sequential mixed-methods case-control study compared between did (cases; group 1) not (controls; 2) receive from research cohort in Victoria,...
Adolescents and young adult (AYA) cancer survivors face unique medical psychosocial sequalae, including chronic health conditions, late effects of treatment fear recurrence. The meaning survivorship may be further complicated for AYAs with hereditary predisposition syndromes. This study used a patient-centered framework to investigate how Li-Fraumeni syndrome (LFS) consider survivorship.An interprofessional team conducted 30 semi-structured interviews (aged 18-41, mean 31 years) enrolled in...
The reproductive decision-making of young people (aged 15–39 years) with Li-Fraumeni syndrome (LFS), an early onset inherited cancer syndrome, has not been studied in depth. Using interpretive description methodology, we conducted semi-structured interviews 30 Australians (mean age 25.5 diagnosed LFS or at 50% genetic risk. With reflexive thematic analysis, show how people’s and ideals for family formation were shaped by a sense responsibility to ensure the health future biological kin....
Abstract The practice of recontacting patients to provide new health information is becoming increasingly common in clinical genetics, despite the limited research evidence patient experience. We explored how men with Lynch Syndrome (LS) understand and experience being recontacted about a potential increased risk prostate cancer. Sixteen LS ( Mean age 51 years) were recruited from an Australian screening study undergo semi‐structured interview. A modified grounded theory approach was used...
Tamoxifen has been demonstrated to reduce breast cancer risk in high-risk, premenopausal women. Yet, very few young women with hereditary and ovarian syndrome Australia use tamoxifen, despite this being a less-invasive option compared risk-reducing mastectomy. This study aims examine women's decision-making about experience of taking tamoxifen their risk.Young BRCA1/2 mutation participated semi-structured qualitative interviews, recruited mainly from metropolitan clinical genetics service....
Background: CASCADE is a successful, Australia-first cancer rapid autopsy programme. Patients are recruited to the programme by their clinician once they understand that further treatment has only palliative intent. Despite its value, rare research method owing partly recruitment challenges. Aim: This aimed explore (1) how, in practice, clinicians select and recruit patients (2) patient experiences of this process. Design: was qualitative study grounded phenomenology. team members...
Adolescents and young adults (AYAs) with cancer predisposition syndromes often experience significant physical psychosocial burdens. These burdens include worry potentially distressing bodily changes due to risk-reducing procedures (e.g., mastectomy) or treatments. This qualitative-descriptive study explored how AYAs Li-Fraumeni syndrome (LFS) relate adjust their bodies under the chronic threat of cancer.
Background Web-based information and social support are commonly used in rare disease communities where geographic dispersion limited provider expertise complicate in-person support. We examined web-based resource use among caregivers of individuals with telomere biology disorders (TBDs), which genetic conditions long diagnostic odysseys uncertain prognoses including multiorgan system cancer risk. Objective This study explored internet-based information-seeking practices perspectives...
The COVID-19 pandemic caused large-scale shifts in healthcare access and delivery that impacted the availability of routine care such as cancer screening. Vulnerable populations, including those with rare cancer-prone genetic disease, faced considerable difficulties managing their risk. Studies characterizing specific impacts on physical, mental, emotional well-being for individuals syndromes are emerging. This study used a patient-centered perspective to characterize how young adults...