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/
Information for participants
- Participant Information Sheet (ages 16 and up)
- Participant Information Sheet (Parent/Guardian)
- Participant Information Sheet (age 15)
- STRONG-AYA Patient information leaflet
- STRONG-AYA Healthcare professional information leaflet
Background
Adolescents and Young Adults (AYA’s) (age group 15-39) with cancer have age-specific needs, different to other age groups due to the phase of life they are in. These challenges can include; disruption to education, fertility concerns, career pauses, financial problems, as well as strain on families and relationships. When accessing oncology services, care providers need to consider the age specific and complex needs of this age group.
In 2018, over 155,000 new cases of cancer in AYAs were diagnosed in Europe and 1,200,000 were reported worldwide. This accounts for 7% of all cancers diagnosed. Advances in cancer treatment have led to increased survival rates and over 80% survive for over 5 years. However, AYA cancer patients are at risk of adverse medical effects (for example cardiovascular disease or new other cancers diagnoses), infertility and psychosocial effects (such as difficulty in romantic relationships and financial toxicity due to unemployment).
Around half of AYAs with cancer currently report unmet needs in relation to information and services that impact their survival rates, late effects of cancer and its treatment, mental health and their recovery to help them participate in society.
To help to accommodate the distinct needs of this age group, oncology services should provide age-appropriate information and communication, ensure privacy offer flexibility in services, facilitate peer support groups and encourage shared decision making between AYAs and their care providers.
Aim
STRONG-AYA is a Europe-wide programme of work that aims to identify and acknowledge the distinct, age-specific needs of AYA cancer patients by implementing a Core Outcome Set (COS). This is a set of questions relating to both quality of life and clinical care to be included in day-to-day clinical practice. Integrating these questions into routine clinical practice will provide valuable insights into the broader impact of cancer on AYAs beyond diagnosis and treatment.
By better understanding these needs we can determine how to improve care and services on offer, with the ultimate aim of reducing the long-term effects of the diagnosis on a patient’s life.
With alignment of research with healthcare practice, the program seeks to enhance decision-making and shape healthcare policy. Ultimately, STRONG-AYA strives to develop effective, affordable, and sustainable value-based care that improves health outcomes and minimizes the long-term impact of cancer on AYAs’ lives.
Collaborators
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
Objectives
The STRONG-AYA project aims to improve healthcare for adolescents and young adults (AYAs) with cancer. The project’s objectives include:
- Developing a core outcome set: Create a standard set of outcomes for AYAs with cancer, clinical and patient generated data.
- Implementing the core outcome set: Integrating the core outcome set into previous research and new research, embedding the COS into clinical practice across five European healthcare systems.
- Establishing data management and clinical decision-making infrastructures: Create national infrastructures to manage outcome data and support clinical decisions.
- Building a pan-European ecosystem: Establishing an online system to share data and analyse outcomes across Europe.
- Developing data-driven tools: Designing tools to analyse data and create visual representations.
- Improving care practices: Enhancing national care practices to better meet the needs for AYAs with cancer.
- Predicting health outcomes: Develop models to identify patients who may be at risk of poorer health outcomes.
- Involving AYAs: Placing AYAs at the centre of the project to ensure their voices shape its development.
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 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 (ENTYAC), to sustain, expand and network with others.
Expected outputs
The expected outputs of the STRONG-AYA program include:
- Establishing a sustainable multi-centre research consortium for European AYA cancer care.
- Developing an evidence-based policy framework for AYA cancer care across Europe.
- Creating a unified patient-reported outcome set for future AYA cancer research.
- Implementing sustainable cancer care policies that improve outcomes for AYAs.
These efforts will lead to improved clinical care in daily practice, ultimately enhancing the patient experience and health outcomes for AYAs with cancer.
The project will relate to other previous, ongoing, and future projects 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
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).
Our PCOR TYA team
Miss Faatimah Patel (NHS)
Mrs Louise Hick (NHS)
Mrs Jeanette Thorpe (NHS)
STARS
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.
Background
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.
STARS used data from 3 studies. Two of these studies relied on data that has already been collected in the past (Understanding Society and BRIGHTLIGHT).
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
Co-Investigators: Dr Angharad Beckett, Dr Adam Martin, Dr Rachel Taylor
Study co-ordinator/Research Fellow: Dr. Oana Lindner
Collaborators:
In Leeds – Mrs Sue Morgan, MBE
In London – Mrs Louise Soanes
Former team members: Luke Hughes, Rizwana Uddin, Joanne McCulloch, Zoe Rogers, Dr Christopher Bedding
Resources
Economic and Social Research Council
Publications
STARS presentation, 12th November 2019
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!
If you think you might be interested, please contact Oana Lindner at o.c.lindner@leeds.ac.uk or Emily Connearn e.connearn@leeds.ac.uk