Select articles from recent issues of the AYA Oncology e-News, published by the Victorian Adolescent & Young Adult Cancer Service (ONTrac at Peter Mac).
Resource for your patients: Fertility After Cancer (Feb 2023)
Fertility is one of the most critical domains for consideration in AYA cancer care. It is well-documented as a key area of concern for young people themselves,1,2 with a lack of fertility information linked to reduced mental health and quality of life in young people with cancer.3,4 In recent years fertility and its preservation in the AYA and broader cancer context has been the focus of numerous guidelines, resources and education interventions,5,6,7,8 and yet due to both patient- and provider-related barriers, estimates suggest that less than 50% of eligible cancer patients know or are told about options for preserving fertility.9
Fertility After Cancer is a new patient education website launched by the Western and Central Melbourne Integrated Cancer Service that aims to help bridge this gap. Developed in direct response to the newly updated COSA guidelines on fertility preservation, the site offers videos and other resources to support and inform fertility-related discussions and decision-making, including explanations of various preservation options and broader discussions around the importance of onco-fertility. Videos are also available with Arabic, Greek, Italian, Mandarin and Vietnamese translations.
Victorian initiative to improve AYA clinical trial access (Sept 2022)
International data demonstrate a strong correlation between clinical trial participation and improved cancer survival. The low rates of clinical trial enrolment observed in AYA is considered a key contributor to the reduced survival gains of this group as compared to older and younger cancer populations.
The barriers for clinical trial accrual in AYA have been well articulated but often focus on conceptual models rather than practical implementation and system modifications that improve AYA trial access. In 2018, the Victorian Comprehensive Cancer Centre (VCCC) established a two-year program of work to understand local barriers to AYA trial access, with the aim of developing targeted solutions that lead to greater AYA clinical trial participation. The program combined expertise in paediatric, AYA and adult oncology, human research ethics and governance, clinical trials and consumer experience to conduct a comprehensive review of barriers to AYA trial participation in Victoria and develop the following outputs in response to three key themes (Ethics and Governance Awareness, Access and Availability):
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A guide for investigators on how to establish a clinical trial open to participants both over and under the age of 18 (research ethics and governance guidelines)
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Standard Operating Procedure and access request form to assist paediatric hospital staff in securing young adult access to their clinical trials
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Guidance on how to facilitate the inclusion of adolescents aged 12-17 on adult oncology clinical trials (for investigators, review boards and pharmaceutical companies)
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A guide to establishing paediatric-adult oncology partnerships
This work is already being applied in settings across Victoria, with potential for translation nationally. For more information on preliminary impacts and to access the above resources visit the VCCC Alliance AYA toolkit and its corresponding publication.
Current guidelines for the treatment and care of AYA (Sept 2022)
COSA Guidelines for fertility preservation for people with cancer
The Clinical Oncology Society of Australia (COSA) has recently launched its updated guidelines for fertility preservation for people with cancer, incorporating evidence for children, adolescents and young adults (AYAs) and adults of reproductive age that have been diagnosed with cancer. They provide evidence-based and consensus-based recommendations to assist health professionals in discussing and managing fertility preservation for people with cancer, including:
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The potential impact of cancer treatments on fertility
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Referral pathways and oncofertility service provision
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Fertility preservation options for people diagnosed with cancer
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Supporting and managing conception and pregnancy in cancer survivors
Adolescent & Young Adult Optimal Care Pathway (AYA OCP)- coming soon
The Adolescent & Young Adult Optimal Care Pathway is a joint initiative between the Paediatric Integrated Cancer Service (PICS) and the Victorian Adolescent & Young Adult Cancer Service (ONTrac at Peter Mac). It is a framework for the delivery of consistent, safe, high-quality and evidence-based care for young people with cancer. The AYA OCP has been designed to complement the existing cancer-specific OCPs to ensure that current, emerging and future developmentally significant health issues for young people are addressed in conjunction with their cancer treatment. Development has been guided by a national expert working group consisting of national leaders in oncology and adolescent health and is underpinned by strong engagement and consultation with young people and community partners. The final document is due to be launched in the coming months.
A comprehensive list of current Australian and international guidelines of relevance to AYA oncology and cancer care is maintained on the Victorian AYA Cancer Service’s website.
Sleep issues: causes, impacts and how to address (Sept 2022)
Sleep difficulties are common in AYA with cancer and can significantly impact upon quality of life. Up to 50% of young people with cancer report sleep disturbance and insomnia during and/or after treatment, with excessive daytime sleepiness and napping, broken sleep, and problems initiating or remaining asleep the most frequently reported issues. Sleep difficulties in AYA have been associated with school and work challenges, deficits in social skills and cognition and emotional regulation difficulties, as well as higher rates of depression, anxiety and posttraumatic stress disorder.