Our PCOR TYA team:
Prof Dan Stark
Dr Oana Lindner
Miss Rizwana Uddin
There are 2 projects currently running: STARS and STRONG-AYA:
Social Integration After a Cancer Diagnosis in Teenagers and Young Adults (TYA)
S.T.A.R.S.
This is an ongoing project, funded by the Economic and Social Research Council. It began in September 2019 and will end in September 2022.
For us, social integration takes place over a person’s life and it is especially shaped during adolescence and young adulthood. It refers to Work, Education, Relationships, and overall happiness with these aspects (‘wellbeing’).
We want to understand how the work, education, relationships and overall wellbeing of young people is influenced by a cancer diagnosis compared to people without a cancer diagnosis.
This will help us understand what might help young peoples’ wellbeing through the services we could offer. The goal is to find out how we can support people with a diagnosis at a crucial time of their lives, to achieve the same or better outcomes as people without the diagnosis.
Why are we running this study?
Because a growing proportion of the population living with and beyond cancer are working age young adults and up to 90% now live with and beyond their diagnosis.
That is a growing part of society who will want to get back to their lives after treatment and need support to achieve their goals.
A cancer diagnosis will disrupt anybody’s life, but even more so for young people who are only just starting to establish their relationships – personal, educational, professional.
The diagnosis can have a significant impact on their wellbeing and development, with impact on them, healthcare, and society.
This will be more challenging for young people compared to people diagnosed later in life because the diagnosis strikes at a vulnerable time of multiple changes that are needed in adulthood – like completing education, leaving home, becoming financially independent, forging relationships and marrying, having children.
What are our main questions?
We ask:
- How does social integration (work, education, relationships) vary from diagnosis onward for people aged 16 to 39?
- What explains differences in social integration in people with and without a diagnosis?
- What can professionals do to help better social integration?
What do we mean by ‘Social Integration’?
- Work (type of work and how satisfied you are with it)
- Education/Training (type of training and how satisfied you are with it)
- Social relationships (number, type, and how satisfied you are with them)
- Wellbeing (how people generally feel about aspects of their life including family, leisure time, etc.)
We want to see how each of these vary through time and what other factors contribute together or separately to help reach goals which young people actually want!
We will be looking at factors related to demographics (like age, where people are based geographically), health (diagnosis, treatment and maybe other illnesses), and psycho-social aspects (i.e. how people feel in themselves, about their diagnosis and other people) which are all known to contribute to peoples’ wellbeing.
How will we answer these questions?
We combine knowledge and methods from multiple disciplines – oncology, nursing, sociology, health economics, and developmental psychology.
We are running 3 linked studies. Two of these studies rely on data that has already been collected in the past.
The third study, S.T.A.R.S., is a new data collection using a Survey and an Interview. If you are treated in Leeds or London you will be invited to this study. Have a look at our leaflet here.
Please contact us if you or someone you know may want to take part in the study!
I have the experience of a cancer diagnosis, may I help?
Yes, please! Come join our Young Advisory Group!
We always welcome more people in our group and your experience is very important to us.
You can become involved through our Young Advisory Group (YAG).
If you think you might be interested please contact Oana Lindner at o.lindner@nhs.net or Luke Hughes at luke.hughes3@nhs.net
No experience is needed – you do not need to know anything about research and you do not need any other experience or expertise other than your own experience of the diagnosis!
Given the nature and topic of the project, we welcome any input from anyone aged 16-39 from Leeds, London, or beyond. Your views, knowledge, opinions can truly shape how we achieve the aims of this project!
Who is involved in this project?
This project is a collaboration between University of Leeds (School of Medicine and School of Sociology and Social Policy), Leeds Teaching Hospitals NHS Trust, and University College London Hospitals NHS Trust, with the support of Teenage Cancer Trust and CLIC Sargent.
Our wider team:
In Leeds:
Principal Investigator:
Prof Dan Stark
Co-Investigators:
Dr Angharad Beckett
Dr. Adam Martin
Study co-ordinator/Research Fellow:
Dr. Oana Lindner
Data Manager:
Miss Rizwana Uddin
In London:
Co-Investigator:
Dr. RACHEL TAYLOR | Brightlight (brightlightstudy.com)
Research Facilitator:
Mr. Luke Hughes
Luke is our research facilitator based in London. His work involves recruiting patients to take part in our research, delivering the questionnaires and interviews across different time points and help running our Youth Advisory Group.
Before joining the team, Luke worked with the Teenage Cancer Trust as a Youth Support Coordinator. He worked on an inpatient ward for young people aged 13-19 with a diagnosis of cancer, with focusing on mental health support. He has worked previously in disability support services, mental health support services, child sexual abuse services. He holds a BA in Psychology, a diploma in Counselling studies and an MSc in Abnormal and Clinical Psychology.
His previous areas of research have focused on the relationship between sexuality and body dissatisfaction among male university students, testing whether implicit measures such as the Implicit Association Test are powerful enough to detect nuanced differences in levels of sexual attraction amongst a homogeneous samples, the relationships between masculine and feminine phenotypes in gay men’s relationship to their sexual identities and the perceived influence of masculine and feminine qualities on their partner preferences. Outside of work he is keen on bakery, performs at stand-up comedy nights around London (apart from COVID!) and is known for his occasional appearances as Spiderman on children’s wards.
Collaborators:
In Leeds – Mrs. Sue Morgan, MBE
In London – Mrs. Louise Soanes
What is the length of this project?
Three years. The project started in September 2019 and will continue until September 2022.
What is our end goal?
Our ambition is that TYAs should have the same or better opportunities and outcomes as their peers or as they would have expected if they were not diagnosed with cancer.
To develop the support to achieve this, we require the evidence this project can deliver.
Our findings will be summarised in an overarching model explaining what helps or doesn’t help people’s social integration after their diagnosis and then put this into practice. This will be relevant to health, psychological, and social care policies and services for young people with a cancer diagnosis.
Follow us on Twitter/Instagram @YoungCancerLife for updates, news, and discussions on this project.
Resources:
Economic and Social Research Council
Publications
To be announced.
The Horizon Europe/UKRI ‘Strong-AYA’ project
The Leeds TYA research group has received substantial funding to PCOR and to Leeds Teaching Hospitals to undertake an ambitious and wide-ranging new research project for 5 years from October 2022. This is part of a Euro 10M overall investment.
Adolescents and Young Adults aged 15-39 with cancer have unique characteristics, and when they require access to oncology services, these should provide expert cancer care and also consider AYAs’ age-specific and complex needs.
There were over 155,000 new cases in Europe and 1,200,000 cases worldwide reported in 2018, around 7% of all cancers). Advances in cancer treatment have led to increased survival rates and over 80% should survive over 5 years. However AYA cancer patients are at high risk of adverse medical effects (e.g., cardiovascular disease or new other cancers), infertility and psychosocial effects (e.g., difficulty in romantic relationships, financial toxicity due to unemployment, and have a greatly increased later death rate than expected for their age-group.
AYAs with cancer are distinct from the paediatric (<15 years) and the older adult (>40 years) cancer populations. Distinctions include their psychosocial needs, evolving physical development, self-image, identity, relationships, sexuality and independence. Factors such as age-appropriate information and communication, appropriate privacy, peer-group support and shared decision-making should be used to maximise care compliance and treatment adherence, reducing peculiar behaviours of this age such as risk-taking (such as substance use. Around half of AYA with cancer currently report unmet informational and service needs, impacting their survival rates, late effects of cancer and its treatment, mental health and recovery to participate in the society.
The project aims: to unite a network of professionals (HCPs and scientists) and patients, some of whom are already collaborating, to research together on the specific challenges of AYA with cancer. This will sustainably align research and healthcare, inform individual decision-making and healthcare policy. We will work towards the most effective, affordable and sustainable value-based care for AYA with cancer to maximize their health outcomes.
The project is a collaboration between:
Netherlands – NEDERLANDS KANKER INSTITUUT, UNIVERSITEIT MAASTRICHT, REGISTRY
Belgium – EUROPEAN CANCER ORGANISATION (E.C.O.), EUROPEAN ORGANISATION FOR RESEARCH AND TREATMENT OF CANCER (EORTC)
France – CENTRE DE LUTTE CONTRE LE CANCER LEON BERARD (CLB), INSTITUT GUSTAVE ROUSSY (GR)
Italy – FONDAZIONE IRCCS ISTITUTO NAZIONALE DEI TUMORI Milano
Poland – NARODOWY INSTYTUT ONKOLOGII IM. MARII SKLODOWSKIEJ-CURIE – PANSTWOWY INSTYTUT BADAWCZY (MSCN)
Service Users – FUNDATIA YOUTH CANCER EUROPE (YCE)
UK – THE UNIVERSITY OF MANCHESTER, THE UNIVERSITY OF LEEDS, UNIVERSITY OF SOUTHAMPTON
The projects objectives are:
- Creating five national research ecosystems and an overall European AYA healthcare research ecosystem, where we will create dynamic generation and use of outcomes data by all with a stake in this. These ecosystems provide an improved way of working together, secure innovative web-enabled resources and a means to securely and ethically collect and share analyses and knowledge. We will use the most recent innovations in distributed learning to achieve this within a specific, wide-ranging and comprehensive regulatory and ethical framework.
- Developing a Core Outcome Set (COS) for AYA with cancer, including clinical and patient-generated data, using participatory research methods.
- Implementing this COS in retrospective and prospective research, embedded in clinical practice and service user’s experiences of their treatment and care.
- Disseminating the outcomes defined in the COS to all diverse stakeholders (patients, HCPs, researchers and policy-makers) using new tools
- Extending our concept to other settings (e.g. centres, countries) over time.
Those already involved in Leeds are:
Leeds Teaching Hospitals NHS Trust Research and Development
Leeds is taking a leading role by:
- Bringing together existing cancer registry and other approved data, in participating nations
- Developing novel methods to risk-stratify AYA with cancer for good and adverse outcomes (in medical, social, psychological and healthcare policy terms) from their individual Core Outcome Set data.
- Promoting the appropriate design and implementation of the national and international ecosystems within our partners systems for AYA cancer research and care
- Supporting the implementation of information technology in participating centres that enables PRO data collection and application in clinical practice
- Working within the European Network for Teenagers and Young Adults with Cancer, to sustain, expand and network with others
The key outputs will include:
- A sustainable multi-centre research consortium in European AYA cancer care
- An evidence-based policy framework for European AYA cancer care
- A unified patient-reported outcome set for future AYA cancer research
- Sustainable cancer care policy for AYA, which improves their outcomes
The project will relate to other projects previously, ongoing and in future in Leeds such as:
The Yorkshire Specialist Register of Cancer in Children and Young People, ESRC STARS (including health economics and novel analytics), QTool/Prompt application in practice, ATOMCat using distributed learning to improve radiotherapy outcomes (Ane Appelt), previous PCOR PRO data in AYA (where regulatory approvals allow), other recent European collaborative research grants within PCOR, Dose intensity and outcomes in UK TYA with cancer PhD (Nicola Hughes), TYAC grant on kidney damage in TYA with cancer, The European Joint Action for Networks of Excellence in AYA with cancer, ENTYAC, and the EORTC project on Quality of Life in TYA with cancer.