Our PCOR TYA team:
Miss Faatimah Patel (NHS)
Mrs Louise Hick (NHS)
Mrs Jeanette Thorpe (NHS)
There are 2 projects currently running. To find out more about them please click on the links below.
Social Integration After a Cancer Diagnosis in Adolescents and Young Adults (AYA)
This project has now ended and is now in the write-up and dissemination phase. It was funded by the Economic and Social Research Council (ESRC ES/S00565X/1). It began in September 2019 and ended in August 2023.
Social integration takes place over a person’s life and it is 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.
What do we mean by ‘Social Integration’?
- Work (income, type of work, satisfaction with work)
- Education/Training (level of education and satisfaction with training)
- Social relationships (number, type, satisfaction with social support)
- Wellbeing (how people generally feel about aspects of their life including family, leisure time, etc.)
We want to see how each of factors above vary through time and what other factors contribute together or separately to help reach the goals which young people actually want!
Seeing how each of these vary, together with changes in people’s values, aspirations and goals will help us describe the ‘biographical disruption’ brought about by a cancer diagnosis to a young person’s life.
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.
This 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 a young person’s wellbeing and development, with impact on them, healthcare, and society. The disruption of the diagnosis will be more challenging for young people compared to people diagnosed later in life. That is 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?
- 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 support better social integration?
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 combined knowledge and methods from multiple disciplines – oncology, nursing, sociology, health economics, and developmental psychology and had the input of our Young Advisory Group.
The third study, involved a new data collection using a Survey and an Interview and took place in Leeds and London.
What is our end goal?
Our ambition is that AYAs 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 produced within this project.
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.
Who was 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 Young Lives VS Cancer (formerly CLIC Sargent).
The STARS Team
Principal Investigator: Prof Dan Stark
Study co-ordinator/Research Fellow: Dr. Oana Lindner
In Leeds – Mrs Sue Morgan, MBE
In London – Mrs Louise Soanes
The Horizon Europe/UKRI ‘Strong-AYA’ project
The Leeds TYA research group has received substantial funding to PCOR, LIDA, 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 co-ordinated by Amsterdam. You can visit the project webpage here: https://strongaya.eu/
Adolescents and Young Adults aged 15-39 with cancer have unique characteristics. When they require access to oncology services, these should provide expert cancer care and also consider AYAs’ age-specific and complex needs.
In this age group, 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% 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 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 or 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.
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.
Netherlands – NEDERLANDS KANKER INSTITUUT, UNIVERSITEIT
MAASTRICHT, REGISTRY – co-ordinating centre
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
- 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.
Leeds Team and roles
Principal Investigator: Professor Dan Stark
Professor of Epidemiology: Professor Richard Feltbower
Clinical Academic PhD Student: Dr Nicola Hughes
Research Fellow: Dr Oana Lindner
Project Manager: Emily Connearn
Data manager: Mr Rob Carter
YSRCCYP Data manager: Mr Lee Norman
YSRCCYP Data collection manager: Mrs Rebecca Christiansen
YSRCCYP Doctoral candidate: Mrs Rebecca Mottram
Research Nurse: Miss Faatimah Patel (NHS)
Data analyst: Ms Louise Hick (NHS)
R&I Manager: Mrs Jeanette Thorpe (NHS)
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 (ENTYAC), to sustain, expand and network with others.
- 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 previous, ongoing, and future projects in Leeds such as:
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
The European Network for TYA with Cancer (ENTYAC)
EORTC project on Quality of Life in TYA with cancer
Developing a 21st century model of nurse-led follow-up after curative germ cell tumour treatment (Gwen Saalmink).
Join our Young Advisory Group!
If you are aged 16 to 39, have the experience of a cancer diagnosis, and want to shape research in this area, come join our Young Advisory Group!
We always welcome more people in our group and your experience is very important to us.
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!