Utility of genomic testing in children, adolescents, and young adults with cancer.

Genomic testing can inform the diagnosis and personalise management of cancers in children, adolescents, and young adults (CAYA). This scoping review explored the clinical utility and impact of genomic testing in general CAYA cancer cohorts. Relevant records published in English between 2017-2024 were identified by searching PubMed. 36 studies (32 original articles; 4 reviews) were identified on genomic testing in CAYA cancers, most of which were advanced cancers. Studies internationally reported that approximately 16-18% of CAYAs with cancer carry an associated pathogenic germline variant where 40% are de-novo, and can guide treatment (eg, DNA repair gene variants). Somatic variants, predominantly copy number or structural rearrangements, inform diagnosis in up to 95% of primary cancers. Between 18-69% of patients have a somatic variant with a matched therapy, but only one third receive the genomic-guided recommendation, predominantly due to declining patient condition. Few studies evaluated the impact of matched therapies on response and survival. Combining comprehensive DNA and RNA sequencing maximises sensitivity. Circulating tumour DNA was detected in most primary cancers and shows high concordance with tumour tissue. In conclusion, genomic testing of CAYA cancers is feasible, informs diagnoses and guides personalised care. Further research is needed on response to genomic-guided treatments.

Ethical, legal and social issues related to genetics and genomics in cancer: a scoping review and narrative synthesis.

Genomics is increasingly being incorporated into models of care for cancer. Understanding the ethical, legal and social implications (ELSI) in this domain is important for successful and equitable implementation. We aimed to identify ELSI scholarship specific to cancer control and genomics. To do this, we undertook a scoping literature review and narrative synthesis, identifying 46 articles that met inclusion criteria. Eighteen ELSI themes were developed, including: (i) Equity of access, which included structural barriers to testing and research, access to preventative and follow-up care, and engagement with health systems; (ii) family considerations, such as an ethical obligation to disseminate relevant genomic information to at-risk family members, (iii) legal considerations, including privacy and confidentiality, genetic discrimination, and the prospective duty to reclassify variants; and (iv) optimizing consent processes in clinical care and research. Gaps in the literature were identified with respect to equity for people living in rural or remote areas, and how to provide ethical care within culturally, linguistically and ethnically diverse communities; including First Nations peoples. Our findings suggest a need for a multidisciplinary approach to examining ELSI in cancer genomics beyond initial test indication and within the broader context of the mainstreaming of genomics in health care.

Adopting a systems-thinking approach to optimise dietary and exercise referral practices for cancer survivors.

PURPOSE: Service referrals are required for cancer survivors to access specialist dietary and exercise support. Many system-level factors influence referral practices within the healthcare system. Hence, the aim of this study was to identify system-level factors and their interconnectedness, as well as strategies for optimising dietary and exercise referral practices in Australia. METHODS: A full-day workshop involving national multidisciplinary key stakeholders explored system-level factors impacting dietary and exercise referral practices. Facilitated group discussions using the nominal group technique identified barriers and facilitators to referral practices based on the six World Health Organisation (WHO) building blocks. The systems-thinking approach generated six cognitive maps, each representing a building block. A causal loop diagram was developed to visualise factors that influence referral practices. Additionally, each group identified their top five strategies by leveraging facilitators and addressing barriers relevant to their WHO building block. RESULTS: Twenty-seven stakeholders participated in the workshop, including consumers (n = 2), cancer specialists (n = 4), nursing (n = 6) and allied health professionals (n = 10), and researchers, representatives of peak bodies, not-for-profit organisations, and government agencies (n = 5). Common system-level factors impacting on referral practices included funding, accessibility, knowledge and education, workforce capacity, and infrastructure. Fifteen system-level strategies were identified to improve referral practices. CONCLUSION: This study identified system-level factors and strategies that can be applied to policy planning and practice in Australia.

Patient navigation across the cancer care continuum: An overview of systematic reviews and emerging literature.

Patient navigation is a strategy for overcoming barriers to reduce disparities and to improve access and outcomes. The aim of this umbrella review was to identify, critically appraise, synthesize, and present the best available evidence to inform policy and planning regarding patient navigation across the cancer continuum. Systematic reviews examining navigation in cancer care were identified in the Cochrane Central Register of Controlled Trials (CENTRAL), PubMed, Embase, Cumulative Index of Nursing and Allied Health (CINAHL), Epistemonikos, and Prospective Register of Systematic Reviews (PROSPERO) databases and in the gray literature from January 1, 2012, to April 19, 2022. Data were screened, extracted, and appraised independently by two authors. The JBI Critical Appraisal Checklist for Systematic Review and Research Syntheses was used for quality appraisal. Emerging literature up to May 25, 2022, was also explored to capture primary research published beyond the coverage of included systematic reviews. Of the 2062 unique records identified, 61 systematic reviews were included. Fifty-four reviews were quantitative or mixed-methods reviews, reporting on the effectiveness of cancer patient navigation, including 12 reviews reporting costs or cost-effectiveness outcomes. Seven qualitative reviews explored navigation needs, barriers, and experiences. In addition, 53 primary studies published since 2021 were included. Patient navigation is effective in improving participation in cancer screening and reducing the time from screening to diagnosis and from diagnosis to treatment initiation. Emerging evidence suggests that patient navigation improves quality of life and patient satisfaction with care in the survivorship phase and reduces hospital readmission in the active treatment and survivorship care phases. Palliative care data were extremely limited. Economic evaluations from the United States suggest the potential cost-effectiveness of navigation in screening programs.

Rapid Protocol Development, Study Startup and Enrolment of a Prospective Study of COVID-19 Vaccination for Patients with Cancer: A Collaborative Approach.

BACKGROUND: COVID-19 is an unprecedented global health emergency. It has been highly disruptive for patients with cancer, both due to an increased burden of severe illness and due to pressure on healthcare systems. COVID-19 vaccination has been an important public health measure for this patient group. AIM: The aim of this study was to describe the rapid design and startup of a multicentre study of COVID-19 vaccine response for vulnerable patients with cancer. Study startup: We set up a multicentre prospective observational study of COVID-19 vaccination response for Australian patients with cancer. Due to intensive collaboration between health services, the funding body and laboratories, we were able to develop a protocol and enrol the first patient within 52 days of the initial study proposal. Rapid startup was further enabled by prompt availability of funding and by high-level engagement of institutional review boards, allowing expedited review. Study enrolment: We rapidly enroled more than 500 patients, 80% within 4 months of study opening. Engagement and follow-up were maintained throughout the course of up to five serial vaccination doses. CONCLUSION: Our study is an example of intensive collaboration inspired by the COVID-19 pandemic and may serve as an example of an agile research response to real-time public health challenges.

Conceptual Framework for Cancer Care During a Pandemic Incorporating Evidence From the COVID-19 Pandemic.

PURPOSE: With successive infection waves and the spread of more infectious variants, the COVID-19 pandemic continues to have major impacts on health care. To achieve best outcomes for patients with cancer during a pandemic, efforts to minimize the increased risk of severe pandemic infection must be carefully balanced against unintended adverse impacts of the pandemic on cancer care, with consideration to available health system capacity. Cancer Australia's conceptual framework for cancer care during a pandemic provides a planning resource for health services and policy-makers that can be broadly applied globally and to similar pandemics. METHODS: Evidence on the impact of the COVID-19 pandemic on cancer care and health system capacity to June 2021 was reviewed, and the conceptual framework was developed and updated. RESULTS: Components of health system capacity vary during a pandemic, and capacity relative to pandemic numbers and severity affects resources available for cancer care delivery. The challenges of successive pandemic waves and high numbers of pandemic cases necessitate consideration of changing health system capacity in decision making about cancer care. Cancer Australia's conceptual framework provides guidance on continuation of care across the cancer pathway, in the face of challenges to health systems, while minimizing infection risk for patients with cancer and unintended consequences of delays in screening, diagnosis, and cancer treatment and backlogs because of service interruption. CONCLUSION: Evidence from the COVID-19 pandemic supports continuation of cancer care wherever possible during similar pandemics. Cancer Australia's conceptual framework, underpinned by principles for optimal cancer care, informs decision making across the cancer care continuum. It incorporates consideration of changes in health system capacity and capacity for cancer care, in relation to pandemic progression, enabling broad applicability to different global settings.

COVID-19 recovery: implications for cancer care clinicians.

The wellbeing of clinicians delivering cancer care needs to be considered and included in recovery roadmaps from the COVID-19 pandemic. In this paper, we refer to a report undertaken by Cancer Australia to review and reflect on the impact of COVID-19 in the delivery of cancer care. The report focused on post COVID-19 recovery and asked 3 questions: What changed? What has been the impact of that change? And how can high-value changes be embedded or enhanced? We suggest the same three questions should also be asked of cancer care clinicians. Using the three Cancer Australia questions, we draw from clinicians' insights collected through the Victorian COVID-19 Cancer Network (VCCN) and from the wider health professional literature. We summarise key features of the COVID-19 experience for cancer care clinicians, highlighting moral distress, fatigue and disrupted practice. We then discuss how pandemic-related ethical values might guide health leaders and administrators to balance support for clinician wellbeing with ongoing delivery of cancer care for patients.

Cancer Australia consensus statement on COVID-19 and cancer care: embedding high value changes in practice.

INTRODUCTION: Driven by the need to reduce risk of SARS-CoV-2 infection and optimise use of health system resources, while maximising patient outcomes, the COVID-19 pandemic has prompted unprecedented changes in cancer care. Some new or modified health care practices adopted during the pandemic will be of long term value in improving the quality and resilience of cancer care in Australia and internationally. The Cancer Australia consensus statement is intended to guide and enhance the delivery of cancer care during the pandemic and in a post-pandemic environment. This article summarises the full statement, which is available at https://www.canceraustralia.gov.au/covid-19/covid-19-recovery-implications-cancer-care. MAIN RECOMMENDATIONS: The statement is informed by a desktop literature review and input from cancer experts and consumers at a virtual roundtable, held in July 2020, on key elements of cancer care that changed during the pandemic. It describes targeted strategies (at system, service, practitioner and patient levels) to retain, enhance and embed high value changes in practice. Principal strategies include: implementing innovative models of care that are digitally enabled and underpinned by clear governance, policies and procedures to guide best practice cancer care; enabling health professionals to deliver evidence-based best practice and coordinated, person-centred cancer care; and empowering patients to improve health literacy and enhancing their ability to engage in informed, shared decision making. CHANGES IN MANAGEMENT AS A RESULT OF THIS STATEMENT: Widespread adoption of high value health care practices across all levels of the cancer control sector will be of considerable benefit to the delivery of optimal cancer care into the future.

Patterns of, and barriers to supportive care needs assessment and provision for Australian women with gynecological cancer and their caregivers: a mixed-methods study of clinical practice.

OBJECTIVES: To document the current clinical practice in 2017 for assessment of supportive care needs and provision of supportive care to women with gynecological cancer and their caregivers in Australia, and to identify the main enablers and barriers to care provision. METHODS: A total of 64 health professionals who care for Australian women with gynecological cancer responded to an electronic survey which explored their use of needs assessment, service-level processes and protocols for support service provision, and identified enablers and barriers to provision of care to both patients and caregivers. Eight respondents underwent an additional in-depth interview to elaborate on enablers, barriers, and gaps in the provision of supportive care. RESULTS: Mostly, needs assessment for women and caregivers was part of current practice but done without validated tools or a checklist. Only 30% of respondents reported having documented referral pathways. Most respondents simply recorded a plan for meeting needs within the patients' medical record (63% for patients; 46% for caregivers) rather than using a formalized care plan (15% for patients; 6% for caregivers). The interviewees' comments supported survey results that having sufficient time to discuss issues was both the most important enabling factor and the greatest barrier to successful supportive care provision. The interviewees further discussed variations in needs based on age, cultural background, and phases within the cancer care continuum, and that best practice supportive care should involve a multidisciplinary team and customizable protocols. SIGNIFICANCE OF RESULTS: There is much room for improvement in the assessment of needs and provision of supportive care to women with gynecological cancer and their caregivers. Approaches to optimize use of consultation time (e.g., needs assessment tools and referral protocols) are necessary. Flexibility in the form and mode of delivery of support may be required to meet diverse personal preferences and incorporate caregivers.

Mortality risk associated with low-trauma osteoporotic fracture and subsequent fracture in men and women.

CONTEXT: There are few data on long-term mortality following osteoporotic fracture and fewer following subsequent fracture. OBJECTIVES: To examine long-term mortality risk in women and men following all osteoporotic fractures and to assess the association of subsequent fracture with that risk. DESIGN, SETTING, AND PARTICIPANTS: Prospective cohort from the Dubbo Osteoporosis Epidemiology Study of community-dwelling women and men aged 60 years and older from Dubbo, Australia, who sustained a fracture between April 1989 and May 2007. MAIN OUTCOME MEASURES: Age- and sex-specific standardized mortality ratios (SMRs) compared with the overall Dubbo population for hip, vertebral, major, and minor fractures. RESULTS: In women, there were 952 low-trauma fractures followed by 461 deaths, and in men, 343 fractures were followed by 197 deaths. Age-adjusted SMRs were increased following hip fractures (SMRs, 2.43 [95% confidence interval [CI], 2.02-2.93] and 3.51 [95% CI, 2.65-4.66]), vertebral fractures (SMRs, 1.82 [95% CI, 1.52-2.17] and 2.12 [95% CI, 1.66-2.72]), major fractures (SMRs, 1.65 [95% CI, 1.31-2.08] and 1.70 [95% CI, 1.23-2.36]), and minor fractures (SMRs, 1.42 [95% CI, 1.19-1.70] and 1.33 [95% CI, 0.99-1.80]) for both women and men, respectively. Mortality was increased for all ages for all fractures except minor fractures for which increased mortality was only apparent for those older than 75 years. Increased mortality risk persisted for 5 years for all fractures and up to 10 years for hip fractures. Increases in absolute mortality that were above expected, for 5 years after fracture, ranged from 1.3 to 13.2 per 100 person-years in women and from 2.7 to 22.3 per 100 person-years in men, depending on fracture type. Subsequent fracture was associated with an increased mortality hazard ratio of 1.91 (95% CI, 1.54-2.37) in women and 2.99 (95% CI, 2.11-4.24) in men. Mortality risk following a subsequent fracture then declined but beyond 5 years still remained higher than in the general population (SMR, 1.41 [95% CI, 1.01-1.97] and SMR, 1.78 [95% CI, 0.96-3.31] for women and men, respectively). Predictors of mortality after any fragility fracture for both men and women included age, quadriceps weakness, and subsequent fracture but not comorbidities. Low bone mineral density, having smoked, and sway were also predictors for women and less physical activity for men. CONCLUSIONS: In a sample of older women and men, all low-trauma fractures were associated with increased mortality risk for 5 to 10 years. Subsequent fracture was associated with increased mortality risk for an additional 5 years.