National roll-out for award-winning digital platform to support young people following diagnosis
An award winning digital platform, produced by a young adult cancer team, is set to be rolled-out nationally following success in the south west.
An award winning digital platform, produced by a young adult cancer team, is set to be rolled-out nationally following success in the south west
A teenage and young adult (TYA) cancer team in south west England has developed an award-winning digital platform to support patients following a cancer diagnosis.
The IAM Portal enables professionals and young people to work in partnership. It provides the care team with an online platform for the management of a TYA network and gives young people access to an electronic holistic self-assessment tool. They can use this to explore and document their needs, and obtain information and support from an integrated framework of resources.
Development of the portal was undertaken by a team that has, since inception in 2009, considered alternative approaches to the development of care for young people diagnosed with cancer. The portal is now being rolled-out to other services across the UK by Teenage Cancer Trust.
The challenges of a more centralised model
Nationally, TYA cancer services have benefited from a centralised model that supports the development of clinical expertise and age-appropriate accommodation. But centralisation in the south west brought challenges regarding patient access and meant long journey times for many who needed care. The principal treatment centre locally is in Bristol, which is not optimal for a region with a population of more than five million and which stretches 250 miles from Tewkesbury to Land’s End.
Centralisation also failed to make best use of the skills available in secondary and community care closer to a patient’s home.
The TYA cancer team recognised that while some young people with cancer require or request referral to specialist teams in Bristol, many can be successfully treated by services in hospitals specifically designated to deliver cancer care for younger patients. This approach is in line with the well-established regional ‘shared care’ network established in paediatric oncology and allows young people to be offered support as close to home as possible.
The most important element in the success of this network model has been the development of regional Teenage Cancer Trust nurse specialists whose role is to work with and across the many different cancer-site-specific teams.
Achieving wider recognition of the validity of this model of care was initially challenging, but early support from commissioners and provider trusts, together with strong evidence for the quality of the service offered, has proved instrumental in promoting the network model of care.
TYA multidisciplinary team meeting
The requirement for patients to be discussed at a TYA multidisciplinary meeting, in addition to a cancer-site-specific multidisciplinary meeting, was intended to ensure that the holistic needs of TYAs were adequately considered (NICE 2005).
All members of the team across the region are fully integrated into the TYA multidisciplinary advisory team (MDaT) meeting – so named to distinguish it from the place of the site-specific multidisciplinary in determining diagnosis and directing treatment. The MDaT meets via WebEx, the online conferencing platform, to review patients at diagnosis, completion of treatment and, as required, at other points in their cancer pathway.
- Importance of partnership working – multiple organisations involved in one service.
- Importance of engaging the whole team across the region in both the development and the integration of the IAM Portal.
- Co-creation between professionals and patients is vital to ensure face validity.
- Integration of the data collected ensures relevance and provides useful analysis for service development.
From the outset, this meeting was structured to ensure that the needs of each patient were discussed holistically using a specially designed needs assessment. But it was recognised that a mechanism was required to ensure the needs assessment was accessible to all the young people the service was caring for.
The Integrated Assessment Map
In collaboration with Macmillan Cancer Support and Teenage Cancer Trust, the team created an electronic holistic needs assessment, known as the IAM, specifically for teenagers and young adults. Young people are requested to reflect on ten domains representing areas of life that may be affected by a cancer diagnosis.
All young people are introduced to the IAM as soon after diagnosis as appropriate. They are encouraged to complete and submit an IAM assessment before each discussion of the MDaT, either on their own or in partnership with a member of the team. The purpose is to encourage the young person to think ‘how am I doing?’ at all stages of their cancer journey.
Submitting the IAM for review by the advisory team helps bring the young person’s voice to the meeting and places his or her needs at the centre of all discussions. This allows members of the team to champion young people’s needs, ensuring that all involved understand the complexity of delivering cancer care in the context of the rapidly evolving social, sexual, psychological and educational needs encountered in this age group.
One young person said of the IAM: ‘I liked it because I feel it is just for young people to give their thoughts and ideas. It gave me time to think. Everyone should have a go because it’s really useful.’
Particular effort is made by the team to promote awareness of participation in clinical trials. There are national and international concerns about the disadvantages faced by teenagers and young adults in this context (Hough et al 2017). The team also ensures that each patient is fully informed about opportunities to protect fertility from the impact of treatment – an issue young people express significant concerns about (Wright et al 2014).
The IAM Portal
Access to the IAM is via a website or app available for smart phones and free to download from Apple Store and Google Play. The team also developed a multimedia website in conjunction with young people who highlighted uncertainty about the reliability of other resources and said they wanted to access age-appropriate, cancer-specific support of this kind. Subsequent development has added a management system for use by the MDaT, providing a platform for managing the team and the TYA network, with the entire platform called the IAM Portal.
After further piloting in the East Midlands, the initiatives developed in the south west have been assured by an ongoing partnership with Teenage Cancer Trust and Macmillan Cancer Support. With the project being rolled-out nationally, the IAM Portal is now the preferred platform for teenage and young adult cancer care.
In November 2017, the team was awarded a Macmillan Professionals Excellence Award for this work, and this year won a British Journal of Nursing innovation award for the development of the specialist nursing team and implementation of the IAM Portal.
In conclusion, the commitment and expertise of the TYA cancer team has led to the development of a responsive and innovative regional service that utilises digital technology to deliver high-quality, equitable care.
The team bridges paediatric and adult practice, and regards service users as young people first and foremost – rather than patients with cancer. Most importantly, the team helps young people cope with the experience of cancer and encourages them to retain, regain or reinvent their plans for life after cancer.
A short video explaining the portal and its benefits to patient care is available online.
The development of IAM Portal owes much to the insight, passion and drive of collaborative teamwork, which ensures there is a continued and widening circle of professionals engaged in providing specialist care for young people with cancer.
Particular thanks to our partners: Teenage Cancer Trust, CLIC Sargent, Macmillan Cancer Support, Sitekit and the Florence Nightingale Foundation.
- National Institute for Health and Care Excellence (2005) Improving Outcomes in Children and Young People with Cancer. NICE, London.
- Hough R, Sandhu S, Khan M et al (2017) Are survival and mortality rates associated with recruitment to clinical trials in teenage and young adult patients with acute lymphoblastic leukaemia? A retrospective observational analysis. doi: 10.1136/bmjopen-2017-017052
- Wright C, Coad J, Morgan S et al (2014) 'Just in case': the fertility information needs of teenagers and young adults with cancer. European Journal of Cancer Care. 23, 2, 189-198.
Jamie Cargill is lead nurse for Teenage Cancer Trust at University Hospitals Bristol NHS Foundation Trust and Florence Nightingale Foundation scholar; Jennifer Cheshire is Teenage Cancer Trust IAM Portal national implementation project manager at University Hospitals Bristol NHS Foundation Trust; Mike Stevens is professor of paediatric oncology at University Hospitals Bristol NHS Foundation Trust