Think back to March 2020. Specifically, think back to how you were feeling in March 2020. As the storm clouds of COVID-19 news rolled in, and the reality of this new, unknown, life-threatening yet ill-defined health threat set in. How distracted were you? How hard was it to concentrate on your work? To stop scrolling through social media; refreshing news articles; looking for any bit of news and nothing in particular all at once?
Did you feel like you were on top of your game? Were those fact-distilling, number-crunching, big-idea-wrangling parts of your brain truly firing on all pistons amidst the impending sense of gloom-and-doom?
Many of us could identify experiencing – at least momentarily – elements of the ‘fight or flight’ response seeping into how we moved through and understood the world around us in early 2020. It would be strange if we had not. This primitive survival instinct clicks into gear automatically when our lives – or our livelihoods – are threatened.
When the uncertain news we are receiving involves the word ‘cancer’, this fight or flight response becomes much more immediate. Studies have long shown that activating the idea of cancer triggers thoughts about mortality in our minds.
“Cancer,” we think, “People die from cancer. I could die from cancer.”
In theory, knowledge is power. But cancer-related information is challenging for patients and families to take in, properly process and remember for later. This is magnified if you’re someone who may not yet have finished high school; someone for whom cancer is the last thing on anyone’s minds. Adolescents and young adults (AYAs) with cancer describe having unmet informational needs about cancer-related late effects, their risk of recurrence, and their future fertility.(1) Having these informational needs met is linked to AYAs reporting better quality of life, better emotional wellbeing and less post-traumatic stress symptoms.(1, 2)
What these studies can’t tell us, though, is whether these young people had unmet information needs because the information actually wasn’t given. It is possible that for at least some of these young people, they simply didn’t remember information that was given. This might be even more likely if they were given a lot of information about a poor-prognosis cancer: research has shown that adult cancer patients remember less from consultations when their prognosis was worse, or when more prognostic information was given.(3).
Canteen’s new Cancer? app looks to offer a new way for young people to keep track of their questions and the information they subsequently find out. From clinical experience, many of the young people I work with will describe having a lot of questions swirling around their heads, but may still not know how to verbalise these once they are sitting across from their medical team. Young people have sometimes bemoaned the bright-and-early morning ward rounds that don’t quite match up with their typical sleep (in) schedules. So, it is unsurprising that my bleary-eyed young patients don’t quite get themselves together to ask the questions that may have been playing on their minds at 3am the night before.
For young people with cancer – many of whom have never set foot in a hospital before their diagnosis – the prospect of sitting opposite an oncologist can be quite intimidating. Even with the most engaging and skillful clinician, there are power dynamics, and gaps in knowledge that follow the young person into the consultation room. Most young people won’t yet have developed strong health literacy – the real-world know-how of navigating the health system.(4) This places young people at a considerable disadvantage within the healthcare interaction. Cultural and language barriers multiply these challenges.
You don’t know what you don’t know – or what you should know, or what might be important for you to know for your quality of life.
This makes it incredibly difficult to know what questions to ask.
While this Cancer? app is a useful tool for organising medical information, on another level this is a communication tool which might offer the opportunity to for young people to formulate their thoughts and questions ahead of time. This sort of conversational scaffolding is one of the most valuable things communication tools can offer to patients who may be distressed, distracted, confused, and exhausted all at once.
The capacity for young people to consider their thoughts ahead of time is key. Digesting confronting and complex health information and responding with follow-up questions while in the doctor’s office is something many adult patients struggle with. And for some young people, the amount of information they want (or are ready to hear) can change so much over the course of their cancer treatment. As they settle in to their new cancer-treatment routine, they are also maturing cognitively and emotionally at the same time. A young person might not be able to digest the details and implications of the list of side-effects and statistics the first time around; but given the chance to review a recorded consultation with their doctor at a later time, they may be emotionally ready to take this in.
There are so many critical times along the cancer treatment trajectory when support for information exploration, decision-making and communication is vital. The decision about whether to enrol in a phase 1 clinical trial (or not) is one.(5) When palliative care and end of life conversations become relevant is another.(6) These are areas our group, the Behavioural Sciences Unit, is currently developing interventions to address.
Building health-related confidence is upskilling our survivors of tomorrow
Health literacy is dynamic, and for young people, health literacy also involves seeking out and digesting information together with close caregivers such as family members.(7) AYAs describe a lack of confidence in determining whether information is valid or reliable.(8) So anything that can help support young people to explore, interact with and navigate the information they get from their medical team is vital. The sense of control this may afford young people is critical to building up their self-efficacy to manage their healthcare. Fortunately, most AYAs diagnosed with cancer in Australia in 2020 will survive. Building health-related confidence and know-how in today’s patients is upskilling our survivors of tomorrow – with skills they will need to be able to interact proactively with the health system for cancer related follow-up for years into survivorship.(9)
Ultimately, communication tools can’t change a young person’s new cancer reality or make the conversations necessarily any easier to bear. But the gift these kinds of tools offer might just be in supporting the young person to find – or create – valuable space. Space between stimulus and response. Between the cortisol-flooding pieces of complicated, discombobulating, life-up-ending cancer information, and what they do (and ask) next.
A young person diagnosed with cancer has so many choices taken out of their control. By enabling young people to choose when, what, and how much information they receive, communication tools like this new Cancer? app may enable young people to become architects – or at least co-designers – of the new informational landscapes they find themselves in. It’s worth our community of clinicians and researchers testing whether these tools might be a way for young people to reclaim some of this lost sense of control for themselves.
Dr Ursula Sansom-Daly leads the Mental Health Research Stream within the Behavioural Sciences Unit at the University of NSW. She is not aligned with Canteen and offers this commentary independently.
- McCarthy MC, McNeil R, Drew S, Orme O, 2, Sawyer SM. Information needs of adolescent and young adult cancer patients and their parent-carers. Support Care Cancer. 2018;26:1655–64.
- Skaczkowski G, White V, Thompson K, Bibby H, Coory M, Pinkerton R, et al. Do Australian adolescents’ and young adults’ experiences of cancer care influence their quality of life? Psychooncology. 2018;27(3):990-7.
- Jansen J, Butow P, van Weert J, van Dulmen S, Devine R, Heeren T, et al. Does age really matter? Recall of information presented to newly referred patients with cancer. J Clin Oncol. 2008;26(33):5450-7.
- Sansom-Daly UM, Lin M, Robertson EG, Wakefield CE, McGill BC, Girgis A, et al. Health Literacy in Adolescents and Young Adults: An Updated Review. J Adolesc Young Adult Oncol. 2016;5(2):106-18.
- Robertson EG, Wakefield CE, Cohn RJ, Battisti RA, Donoghoe MW, Ziegler DS, et al. Piloting a parent and patient decision aid to support clinical trial decision making in childhood cancer. Psychooncology. 2019;28(7):1520-9.
- Arruda-Colli MNFd, Sansom-Daly U, Santos MAd, Wiener L. Considerations for the cross-cultural adaptation of an advance care planning guide for youth with cancer. Clinical practice in pediatric psychology. 2018;6(4):341.
- Gessler D, Juraskova I, Sansom-Daly UM, Shepherd HL, Patterson P, Muscat DM. Clinician-patient-family decision-making and health literacy in adolescents and young adults with cancer and their families: A systematic review of qualitative studies. Psychooncology. 2019;28(7):1408-19.
- Lin M, Sansom-Daly UM, Wakefield CE, McGill BC, Cohn RJ. Health Literacy in Adolescents and Young Adults: Perspectives from Australian Cancer Survivors. J Adolesc Young Adult Oncol. 2017;6(1):150-8.
- Signorelli C, Wakefield C, Fardell J, Wallace W, Robertson E, McLoone J, et al. The impact of long-term follow-up care for childhood cancer survivors: A systematic review. Critical Reviews in Oncology / Hematology. 2017;114:131-8.
For more information about the Cancer? app, visit the Canteen website.