AYA Oncology e-News

A quarterly email-based newsletter for Victorian clinicians from all disciplines providing info on AYA cancer-related clinical issues, services, research, professional development opportunities and more.

Join our mailing list
 

Select articles from recent issues of the AYA Oncology e-News, published by the Victorian Adolescent & Young Adult Cancer Service (ONTrac at Peter Mac).

September 2022

  1. Victorian initiative to improve AYA clinical trial access
  2. Current guidelines for the treatment and care of AYA
  3. Sleep issues: causes, impacts and how to address

1. Victorian initiative to improve AYA clinical trial access

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

2. Current guidelines for the treatment and care of AYA

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.

3. Sleep issues: causes, impacts and how to address

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.

Contributing factors:

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.

Treatment options

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

AYA Can-Sleep is an evidence-informed model for identifying and addressing sleep difficulties in young people with cancer that takes a stepped care approach to screening, provision of and coaching around a purposely designed self-management booklet, and individualised psychology-led CBT. An evaluation of this model is currently under review. Health professionals working with AYA experiencing sleep difficulties may wish to attend an upcoming webinar on AYA Can-Sleep and multidisciplinary applications of the strategies on which it is based.

Practice points

  • 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.

References

  1. 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.
  2. 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.
  3. 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.

Back to the top