By Alison Baker, Clinical Nurse Consultant with NSW/ACT YCS
I had the opportunity to attend the Global Congress, an international event bringing together medical professionals and advocates in AYA cancer care. As the first face to face event since the covid pandemic, it was fantastic to reconnect with over 400 national and international colleagues. There were many great presentations across the Congress. Here are a few take home messages which I found of interest -
Power of the patient and survivors voice and story
We all recognize and appreciate the power of the patient and survivor’s story. They are the experts in AYA care and teach us so much. Throughout the Congress, there were many patients who told their story and each presentation, there were lessons learnt about how we (AYA health professionals) can improve and adapt to meet the needs of this patient group. Unique patient with unique needs – need to look at unique strategies and resources to support them.
Education and vocation
We know and understand a cancer diagnosis can impact education and employment for AYA patients. One of the presentations highlighted just how significant it was.
Education goals –
- 65% of AYA patients reported a change in goal due to cancer diagnosis
- 86% of AYA patients reduced their goals (including change in course, moving to part time work)
Vocational goals –
- 57% of AYA patients reported change in employment goals due to cancer diagnosis
- 88% of AYA patients reduced their goals
Adherence
There were a number of presentations which discussed adherence and the challenges in the AYA population.
Adherence is a complex behaviour.
- AYA are more likely to miss a dose of oral chemotherapy during weekends, on days when their adherence motivation decreased from their personal average, on days when their negative affect decreased from their own average.
21-60% of AYA patients miss doses of medications.
- Factors which drive non-adherence: motivation, memory and concentration, burden and impact, knowledge, resources, self management skills.
- 79% of AYA reported different set of barriers to other AYAs therefore, a tailored and personalised approach is needed.
India
Listening and learning about AYA care in India was very interesting and demonstrated such a stark contrast to Australia.
- AYA defined as 15-29 years old
- 2020 Data: 80 000 new diagnosis/year (8% cancer burden)
- Approximately 220 AYA patients diagnosed each day
- Treatment abandonment (failure or refusal to start or complete treatment) is third ranking cause of death in cancer patients.
- Abandonment is highest is patients diagnosed with osteosarcoma, due to fear the patient will be told they need an amputation
The Congress has generated many thoughts and ideas for future planning within the nursing role and wider Youth Cancer Service team. Thank you, Canteen, for the opportunity to attend the Congress.
To receive information about the 6th Global Adolescent and Young Adult Cancer Congress hosted by Canteen in Melbourne December 2024, visit this link.
