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Select articles from recent issues of the AYA Oncology e-News, published by the Victorian Adolescent & Young Adult Cancer Service (ONTrac at Peter Mac).
- Victorian initiative to improve AYA clinical trial access
- Current guidelines for the treatment and care of AYA
- Sleep issues: causes, impacts and how to address
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.
Additional resources for patients:
- Maybe Later Baby? A guide to relationships, sex and fertility for young people with cancer (CanTeen) – honest, clear information about fertility options before treatment and issues relating to sex and relationships.
- Maybe Later Baby? A guide to relationships, sex and fertility for young people after cancer
(CanTeen) – honest, clear information about fertility options after treatment and issues relating to sex and relationships.
- FUTuRE Fertility – an oncofertility service with fact sheets for young people on various topics relating to fertility and sex, such as common questions about fertility after cancer and fertility-related psychological impacts
Additional resources for clinicians:
- COSA Guidelines for fertility preservation for people with cancer – recommendations to assist clinicians in discussing and managing fertility preservation for people with cancer and broader aspects of reproductive health
- Enriching Communication Skills for Health Professionals in Oncofertility (ECHO) – an 8-week US-based online training program that includes psychosocial, biological, clinical and skills building modules to help oncology allied health professionals communicate timely and relevant information regarding reproductive health to their AYA patients. The program is provided at no cost but is only offered at specific times throughout the year.
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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):
- 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)
- Standard Operating Procedure and access request form to assist paediatric hospital staff in securing young adult access to their clinical trials
- Guidance on how to facilitate the inclusion of adolescents aged 12-17 on adult oncology clinical trials (for investigators, review boards and pharmaceutical companies)
- 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.
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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:
- The potential impact of cancer treatments on fertility
- Referral pathways and oncofertility service provision
- Fertility preservation options for people diagnosed with cancer
- 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.
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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.
Young people are at greater risk for sleep difficulties than older and younger cancer populations, due in part to biological and behavioural life stage factors. Natural changes in circadian rhythm and common AYA lifestyle factors (e.g. evening activities and consumption habits, early morning school/work commitments) often result in later bedtimes and shorter sleep duration. Cancer can further exacerbate the problem with sleep disruptions caused by hospital admissions, medications (e.g. steroids), physical symptoms (e.g. pain) and treatment-related side effects. Impacts to sleep may continue (or arise) post-treatment due to the range of physical, emotional and practical stressors many young people experience during this period.
Cognitive behavioural therapy (CBT) is recommended as first-line treatment and has been proven effective in treating sleep difficulties, with results that are safer (e.g. no physical side effects) and more sustainable compared to short-term pharmacological treatments. CBT can include any number or combination of psychoeducational, behavioural and cognitive components, tailored to individual needs and circumstances. It is well-suited to AYA as it can also help address other co-morbid issues highly prevalent within this age group, such as fatigue and anxiety.
With access to traditional CBT support by a trained psychologist or counsellor often limited, self-management resources have been shown to be an effective and acceptable alternative for the treatment of sleep difficulties.
Approaches for AYA
- Sleep issues are very common in AYA during and post-treatment- consider screening for sleep difficulties as part of routine practice to assess the presence of symptoms and risk factors.
- While traditional CBT is the ideal first line treatment for insomnia, self-management CBT resources are also effective, particularly if combined with psychoeducation- the AYA Can-Sleep guide may be provided as a resource to young people and assist in clinical discussions (available early October 2022); Insight Timer is a popular app that uses guided meditations, music and talks to help with sleep, relaxation and mindfulness.
- Referral to specialist sleep services may be required when underlying conditions such as sleep apnoea or restless legs syndrome are present.
- Zhou ES, Recklitis CJ. Internet-delivered insomnia intervention improves sleep and quality of life for adolescent and young adult cancer survivors. Pediatr Blood Cancer. 2020 Sep;67(9):e28506.
- Zhou ES, Vrooman LM, Manley PE, Crabtree VM, Recklitis CJ. Adapted delivery of cognitive-behavioral treatment for insomnia in adolescent and young adult cancer survivors: a pilot study. Behav Sleep Med. 2017 Jul-Aug;15(4):288–301.
- Vaughan E, Ftanou M, Lewin J, Murnane A, Berger I, Wiley JF, et al. AYA 'Can-Sleep' programme: protocol for a stepped-care, cognitive behavioural therapy-based approach to the management of sleep difficulties in adolescents and young adults with cancer. Pilot Feasibility Stud. 2022 Jul;8(1):159.