By Emma Thistlethwayte, Teenage & Young Adult Lead Nurse, The Royal Marsden NHS Foundation Trust
Cancer is a traumatic diagnosis to receive at any age, but for young people, it can be especially devastating. Cancer treatment puts a big pause on their life during a time when they are going through vast life changes. Young adulthood is a time of significant emotional and hormonal change as they figure out their identity and would ordinarily be going out with friends or forming close relationships.
For young people living with cancer, isolation and social anxiety can be a big issue - their treatment plan may mean they can’t socialise with friends or they might be worried about body image. Many experience sleep problems and depression due to their cancer treatment which can significantly hinder their progress through treatment and recovery.
Commitments to mental health for young people not being met
In the UK the NHS Long Term Plan made a commitment back in 2015 to improve the mental health of young people under 25 and an enquiry into patient experience1 from the All Party Parliamentary Group on Children, Teenagers and Young Adults with Cancer highlighted that mental health problems are at their worst ever. This lack of access to mental health support was highlighted in the Teenage Cancer Trust’s #NotOk campaign, which showed a third of young people with cancer weren’t able to get the help they needed.
In recent years The Royal Marsden NHS Foundation Trust in London has seen an increasing number of young cancer patients who require input from psychological support services. Consequently, these young people are facing increasing length of waiting times to be seen after referral to NHS services. There is clearly a long way to go in meeting previous commitments and ensuring that the physical and mental health of young people are viewed equitably through their treatment pathway.
How technology provides timely mental health support for young cancer patients
Young people living with cancer have unique psychological needs and timing is critical to ensure patients receive the help they need, when they need it. At The Royal Marsden we really wanted to be able to provide more timely support in this area which was flexible and tailored to their unique diagnosis plan, and to also empower young people with a more proactive as opposed to reactive approach to supporting their mental health.
Having surveyed our teenage and young adult patients about what they wanted with regards to psychological support, The Royal Marsden decided to support them with a cancer care digital app to help improve their experience. Technology has the ability to break the stigma around mental health and cancer for teenagers and young adults (TYA). It can provide personalised resources which helps people to feel like they understand their diagnosis and treatment plan better, giving them access to what they need at any time of day.
Incorporating the patient voice was very important for us so that we could ensure we were meeting the specific emotional wellbeing needs of our patients during their treatment and beyond. We used our youth forum which consists of young people who have all experienced care at the Royal Marsden, to provide feedback on the use of technology for this purpose. This provided us with a unique insight into what they needed and gave the patients themselves an opportunity to have ownership of their experience during cancer treatment, and to help future cancer patients.
Co-creating mental health support with patients
As a result, the TYA oncology team decided to offer patients an app which would include personalised content and information about the treatment and care information they need in a way that is easily accessible and digestible. It was important for us that this content was codeveloped and cocreated with the patient group and clinicians at The Royal Marsden to ensure it appealed to their age group and provided the exact information they felt they needed.
To make the content as personalised to this group as possible we focused on writing it aligned to key themes including body image, fertility, fatigue, sleep and managing anxiety. This, coupled with The Royal Marsden’s TYA Instagram account, helps to connect young people and provide a platform for their unique perspectives and unmet needs.
We began working with digital cancer care specialist, Careology, in order to provide this personalised, cocreated content in an app which patients could access at home. The app also provides a broader library of content and a direct line to Macmillan Cancer Support as well as a symptom tracker tool based on the symptoms they are experiencing so we can track and manage how they’re doing during their treatment.
The future of mental health support in cancer care
Using technology to provide mental health support for young people with cancer is a significant step forward in cancer care and healthcare as a whole. Engaging young cancer patients can be challenging but we found that by involving them in the development process of the app, it gave them a sense of agency and allowed them to take an active role in their recovery. It also helped to connect people with the support and resources they may not otherwise been aware of such as content provided by both Trekstock and Young Lives Versus Cancer, but also to the unique insight of the experience of the young person themselves.
The app's flexibility provides timely support which allows patients to get the help they need and gives them more engagement in their treatment progress and recovery. It gives young cancer patients a sense of control and ownership over their experience, helping to improve their overall wellbeing and quality of life during and after cancer treatment.
This is part of a quality improvement project for us at The Royal Marsden. Our goal in using an app was to help young people living with cancer to develop awareness of their mental health and allow them to access information and tools to support their mental wellbeing, irrespective of location and time. What’s more, for those on waiting lists for more intensive support from our psychological therapy services or community mental health provision, the app will provide a tool that can help them while they wait.
Technology has the potential to not only break down the barriers to accessing mental health support but improve the lives of young people living with cancer with personalised information. It’s an exciting next step for us at The Royal Marsden. Ultimately, we hope that by providing a flexible, accessible, and tailored approach we can help to overcome the barriers that young cancer patients may face in accessing traditional mental health support services.
The global impact
The impact of digital cancer treatment for young people’s wellbeing would be significant if we could achieve this on a global scale. By providing convenient, affordable, and accessible care, digital cancer care could help millions of young people around the world who are going through cancer treatment.
Digital wellbeing services could also help to improve the quality of care by providing real-time data and insights, it could help clinicians to make better decisions about treatment and care.
This is an exciting prospect with immense potential for improving patient outcomes. We have only just begun to scratch the surface of what is possible.
------
About Careology
Careology is building the world’s leading digital cancer care platform. By equipping and seamlessly connecting patients, caregivers and healthcare teams in a complex pathway, our mission is to use technology to transform traditional cancer care and change everyone’s cancer story for the better. Today the platform allows patients to manage and navigate all aspects of treatment from their device, while leveraging critical data on symptoms, medications, side effects and more, to deliver insight and analysis to clinical teams through a ‘virtual ward’. By increasing the potential for patients to self-serve, improving workflows, making 24/7 monitoring possible and putting a unique data set to work, we are helping to relieve pressure on health systems, while reducing costs, improving patient and clinician experience, and optimising health outcomes.