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Impact of cancer diagnosis on social reintegration

Lead Research Organisation: University of Leeds
Department Name: School of Medicine

Abstract

A growing proportion of the population living with and beyond cancer are working-age cancer survivors, and 300,000 are estimated to be teenagers and young adults (TYAs) aged 16 to 39. With advances in medical treatments, up to 90% of TYAs now live beyond their treatment, a growing population. A cancer diagnosis will disrupt anybody's life, their personal biography, resulting in a significant impact on their physical, emotional, social, and economic well-being. This will be even more challenging for young people, diagnosed at a vulnerable time of multiple transitions and emerging adulthood (e.g. completing education, leaving home, becoming financially independent, forging relationships/marrying, having children). Our project aims to understand how the social integration of TYAs is impacted by a cancer diagnosis. We will describe their social reintegration (SR) through outcomes relating to: employment (income, type of employment); educational attainment (level of education and satisfaction); social development (quantity and quality of social support, connections, and participation); and subjective well-being (how people feel about their life, including satisfaction with key life domains such as health, family, income, social relationships, leisure time, work, and sex life). We want to understand which factors contribute (together or independently) to enable or disable TYAs' SR trajectories following treatment. This will be facilitated by linking knowledge and methods from multiple fields such as medical and psychosocial oncology, sociology, and developmental psychology. We will explore how social science perspectives and methodologies can inform the development of health and social care support that minimises the impact of cancer on TYAs' lives.

Through 3 interconnected strands including a qualitative sub-study we will explore, in turn, several sets of factors that may influence TYAs' SR trajectories: socio-demographic factors (e.g. age, gender, geographical area); clinical factors (e.g. cancer type, time since diagnosis); psychosocial factors (e.g. extraversion, self-efficacy); patient-reported outcomes ('PROs', e.g. ongoing symptoms, health-related quality of life). Other factors, potentially unaccounted in existing literature, may emerge from our qualitative patient interviews. This will enable the development of stratified, evidence-based knowledge to improve the educational, employment, and social development opportunities of TYA cancer patients. To evaluate the influence of socio-demographic and clinical factors we will analyse and compare 2 existing databases. These databases include information on our planned outcomes in the general population and a nation-wide cancer group. To evaluate the influence of psychosocial factors and patient-reported outcomes we will run a longitudinal study with 2 patient groups (one during and one after treatment) across 2 centres. To explore wider potential factors we will run interviews with TYAs in the socio-demographic and clinical strata defined by the secondary data analyses.

Our ambition is that TYAs should have the same or better opportunities and socio-economic 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 will deliver. Within 3 years, the 3 strands of our project will come together to offer a comprehensive description of the 'biographical disruption' and inequality of opportunity and outcomes brought about by a cancer diagnosis in the lives of TYAs. This will be summarised in the Multidimensional Stratification Model of Social Reintegration Outcomes, which will be relevant to many health and social care policies addressing patients' future socio-economic outcomes.

Planned Impact

Through this project we will build a rounded and detailed picture of social reintegration outcomes in teenagers and young adults (TYAs) diagnosed with cancer. The 3 strands of our project, described through 3 interconnected studies will come together to offer a complete view of the extent and mechanisms of the 'biographical disruption' and liminality brought about by a cancer diagnosis in the lives of TYAs. The project will produce: (1) knowledge regarding specific socio-demographic factors shaping TYAs' social reintegration over time, compared to matched peers without cancer; (2) knowledge regarding which clinical factors further contribute to variations in social reintegration; (3) knowledge on which patient-reported and psychosocial factors, over time, influence TYAs' social reintegration, beyond the socio-demographic and clinical risks. This knowledge, co-produced with patients' support, will be summarised within our Multidimensional Stratification Model. Our planned impact activities will result in (4) the necessary framework to implement this Model in existing NHS clinical, psychological, and social cancer care. Through this project we aim to provide the evidence required to support equitable optimal social reintegration following a severe but largely curable illness in a growing population.

Following the principle of co-production, we plan substantial engagement and dissemination events throughout the lifespan of this project. They will be directed at the general public, patients, clinical, managerial, and academic professionals, and third sector stakeholders. Beyond the academic presentation and publications, our activities will encompass multiple meetings, discussions, and workshops with patients, public, and NHS healthcare staff. These will focus on the planned content of questionnaire evaluations and interviews and practical strategies that will facilitate patients' support. Two methodological workshops will lead to additional impact by sharing lessons learned and guidelines for future implementations within other healthcare specialties and networks.

We will (1) undertake two workshops, training professional colleagues on the National Cancer Research Institute TYA Clinical Studies Group on our methods and findings; (2) prepare annual newsletters which will inform all relevant stakeholders in our UK, European, and worldwide Adolescent and Young Adult research networks; (3) take an active role in workshops and dissemination opportunities in patient, public, NHS, and academic conferences and meetings; (4) create the TYA Research Advisory Group to train young people in this field, providing the patient-expert input and collaborations for further projects; (5) create an online community to share experiences and engage patients and interested public in active dialogue; (6) impact upon the NHS England Clinical Reference Group and the relevant third sector (including Teenage Cancer Trust and CLIC-Sargent); (7) undertake focused media activity to impact upon the public through the faculty head of communications and media relations officers; (8) undertake dissemination with youth theatre and arts groups (as exemplified by BRIGHTLIGHT) to impact upon wider society; (9) disseminate our work in real time via our website and other social media.

We will evaluate the impact of our project in an on-going manner, feeding this evaluation back into the development of our impact strategy. An Impact Evaluation Plan will be developed to track the outcomes of this project according to criteria of 'Relevance, Effectiveness, Efficiency, and Sustainability'. Various methods will be employed - use of feedback surveys with workshop participants, tracking their 'response' and subsequent actions taken (6 months later); capturing audience responses to theatre/arts events (e.g. use of Vox Pop-style qualitative methods); tracking social media engagement (e.g. twitter-analytics) to determine level of engagement and global reach.
 
Title FOSS STARS Artwork 
Description During the Festival of Social Sciences we showcased our preliminary STARS results to: clinicians, charities, young people living with and beyond cancer, various departments in the University of Leeds (medical research,health sciences, school of performance arts, social sciences, and CHORAL collabration). An illustrator in the room created visual materials in real time about what they heard said and the issues raised. 
Type Of Art Artwork 
Year Produced 2023 
Impact Artwork which initiated and summarised discussions. 
 
Title STARS Logo Identity Artwork 
Description Throughout 2019-2021 we engaged with an independent illustrator to create the identify and logos related to the STARS project. They had workshops with our group of young adults with the lived experience of cancer, they created mood boards and together designed the imagery for the project. 
Type Of Art Artwork 
Year Produced 2021 
Impact Artwork that has been used in all the STARS communications and disseminations. 
 
Description This research project encompassed three separate, but inter-connected studies. In the first study we created and described the non-cancer comparison group: social outcomes in young people aged 16-39 with a variety of non-cancer illnesses (asthma, arthritis, diabetes, epilepsy, high blood pressure, clinical depression) who were matched with people without any illnesses. In the second study we described social outcomes in a nationally representative group of AYAs with cancer (aged 13-24), recruited in 2012-2014 who we matched to a non-cancer comparison group. In the third study we recruited a new set of young people aged 16-39, over 2019-2023, and we described their social outcomes versus a matched non-cancer comparison group. The qualitative component of this third study described in more depth the potential mechanisms of these problems and patients suggest support strategies.

Upon analysing and drawing conclusions within these datasets, we found evidence of social and economic disruptions, which varied across illnesses, gender, and age. Some of these disruption, and especially mental health and health-related quality of life, varied in cancer patients across time and were particularly affected areas in those with more severe cancers.

Study 1: People with asthma, arthritis or depression report having less friends; this was particularly the case for female participants and people who were younger (under 25). Loneliness was higher in people diagnosed with arthritis, epilepsy, hypertension or depression, especially women and younger participants. There were no differences in social media use, relationships, or household formation. The likelihood of having a degree was lower for people with arthritis, epilepsy, depression, and hypertension, especially women and young people. People diagnosed with arthritis, epilepsy, depression were less likely to be in employment, especially when younger. People with arthritis or depression had lower earnings, especially younger participants.

Study 2: The second of these studies utilised data from BRIGHTLIGHT (N=401) - a nationally representative sample of young cancer patients aged 13-24 recruited across 97 NHS Trusts between 2012 and 2014. Comparison was pursued with matched controls from UKHLS (N=765) and within the cancer population at Time 1 (6 months post-diagnosis) versus Time 2 (3 years later).

Similarly to the first study we found evidence of social and economic disruptions. While most participants lived with their parents at both time points, young cancer patients were more likely to transition to and from their parental households between the two time points. Most participants were not in any relationships at the first time point with a larger likelihood of not being in a relationship at the second time point; they were also less likely to build new relationships and more likely to end existing ones. At first time point young cancer patients were less likely to be in education or employment, but by the second time point the gap in employment compared to controls narrowed and more young people were in education. There were more delays in achieving education due to pauses during the 3 years. Mental health and health-related quality of life were overall worse for young cancer patients but they improved to levels similar to those of controls by the second time point. This improvement was not seen in participants with more severe cancers, where there were more depressions cases and poorer health-related quality of life at both time points. While women were more likely to have poorer HRQoL and higher anxiety and depression at the first time point, there were no other gender differences by the time people were 3 years post-diagnosis.

Study 3: The third and final study had a quantitative and a qualitative component. The quantitative component included 279 participants from 2 NHS Trusts (North and South of England) who were aged 16 to 39 at diagnosis and time of the study. The quantitative survey was offered at two time points: when they entered the study (Time 1, baseline) and 6 months later (Time 2). The survey was distributed to a cross-section of participants who were at minimum 6-months post-diagnosis (i.e. early within the cancer journey) or 3-5 years post-treatment (later in the cancer journey). Within the quantitative component they were matched to a UKLHS non-cancer comparison group.

Similar to the second study, we found that young people with a cancer diagnosis were less likely to be in employment at Time 1. However, we observe an inverted U-curve - initially as time passes from diagnosis, they slowly return to employment, and then employment for this group reduces again as time since treatment passes. A larger proportion of participants were in education at Time 1 and the likelihood of returning to education was higher for all young cancer patients as time passed from their diagnosis. While more TYAs were sick/disabled/NEET at the Time 1, less were so at Time 2 and fewer were NEET compared to the comparison group, as time passed from treatment. If they were in work, young cancer patients had higher net pay than matched controls. AYA-onset cancer patients show higher job satisfaction when closer to diagnosis, but this decreases to the same level as the comparison group or even lower, several years from diagnosis. We observed similar levels of financial difficulties in the two groups, which were mainly dependent on employment status. Finally, we observed higher levels of anxiety, depression, and worse health-related quality of life compared to the non-cancer population. This improves as time from diagnosis passes, but decreases again for people who are a few years post-treatment.

Finally, the qualitative study offers additional insights in the processes or mechanisms behind the differences and time-related changes we see in people who are at a shorter or longer time since their diagnosis or treatment. We have rich findings from in-depth interviews with 43 young people who also took part in the survey. The cancer diagnosis and treatment trigger biographical disruptions which are observed through their social integration outcomes (their employment, education, and social relationships). Parts of young people's developing identities, which are tightly tied into their social endeavours, are placed on pause or disrupted requiring re-assessment and change. Disruptions to education pause their academic progress, but also how they view their identity and future perspectives; disruptions to their work and career emphasise the need for flexible work and normalisation of changes in career paths, goals and aspirations, while they adapt to the physical and psychological changes triggered by their experience. Social relationships that were previously considered important break down, and new ones may be forged. Personal romantic relationships may also break down and when new ones could be formed they are overshadowed by the challenges of 'disclosure' and in some cases disrupted fertility. All these changes result in the high emotional impact of the diagnosis and treatment which is felt as persistent anxiety and a sense of 'identity on pause'. Participants in the interviews suggest a range of support strategies which we plan to take further in the intervention we would like to see funded, designed, and tested. These focus on: education as a potential positive area, employment, social network awareness, tailored psycho-social and mental health support adapted to this age groups.

Conclusion: Overall our findings suggest the need for age-appropriate tailored approaches to help AYAs with a cancer diagnosis. Interventions, while they should be offered to all, should focus on people with fewer or impoverished social support networks, people who are not in education or employment at diagnosis and especially when they finish treatment, and people who display symptoms of poor mental health and health-related quality of life.
Exploitation Route There are two ways in which we would like to see this work taken forward. First, we would like to seek replication and extension of this work internationally. As a start, the current work we are pursuing on STRONG-AYA created an initial international 'consortium' formed of 5 European countries where age-appropriate AYA care is implemented within their healthcare systems. It seeks to create the building blocks of an European 'ecosystem' where harmonised, consistent data is collected from this patient group in order to have appropriately powered insights for evidence-based problem setting and decision-making for solutions/interventions. However, importantly, the work in STRONG-AYA is not focused specifically on adverse social outcomes and does not seek specifically to address these problems. It is simply a building block to the harmonisation of outcomes evaluated and for the creation of an initial international team.

Second, we would like to seek funding for the design and trialling of an inter-discipline intervention for the adverse social outcomes seen in this population. We attempted this through the Horizon Europe grant call for which we applied in September 2024 (Social-AYA). This would have enabled us to build a European network of social scientists with an interest and specific expertise in adverse social outcomes interventions. This work tallies well also with the interests of NHS clinical experts, charities and advocacy organisations in this field, who are also developing interventions to test in the specific area of counterbalancing the biographical disruption of AYA-onset cancer. As this was not funded, despite the high rating on potential and quality, we wish to access a different route of funding for our Social-AYA project via a senior researcher fellowship and other grants.
Sectors Communities and Social Services/Policy

Digital/Communication/Information Technologies (including Software)

Education

Healthcare

Government

Democracy and Justice
URL https://pubmed.ncbi.nlm.nih.gov/38611010/
 
Description Non-academic impacts: 1. Establishing networks and relationships with research users: Several patient- and public-facing dissemination activities have been planned for this project and then delivered. This includes showcasing our results to TYAC, Festival of Social Sciences, Pint of Science, Children & Young People's Cancer Association (CCLG), and the 5th and 6th Global AYA Congress in 2024 and 2025. Each of these activities had in the audience either members of the general public, young people with lived experience, representatives of patient advocacy groups and charities, as well as clinicians and academics. Thus, throughout these activities we managed to reach an appropriately varied audience represented by the stakeholders we aimed to reach. As a result of these efforts as well as the collaborations with charities and patient advocacy groups in the Social-AYA grant proposal, we are now applying for funding to develop a Living Lab to enable us to consult with service users, people with the lived experience, and other stakeholders on a regular basis. 2. Acknowledging the expertise and active role of research users: Throughout STARS young people with a lived experience have been involved in most stages of the research process. They helped shape the original project proposal prior to funding, they offered insights into how the research should be delivered to participants, the structure of the survey as well as the interview topic guides. The models used for involving them and the lessons learned are now being taken up by other similar projects taking place in the University of Leeds within our research group, including the involvement of service users in the delivery of the current STRONG-AYA project. If funded, we hope the Living Lab initiative will be able to further build upon this. 3. Developing good understanding of policy and practice contexts: The STARS project enabled the clinicians and academics to build a thorough understanding of the context in which our evidence base may operate. Throughout STARS we engaged in conversation with relevant charities such as Young Lives vs Cancer to understand their approach to support young people's social outcomes. Shortly after this informative engagement the charity pursued a independent evaluation of these outcomes in their service users which helped shape their ongoing and future policies and actions. The full report of their work, can be found here: https://static1.squarespace.com/static/5c86931b4d87114c07db1adb/t/66b647394980aa35a6b8179d/1723222038265/CancerCareReport. Given the aligned views and aims of this charity and our academic research team members, we hope to build further dialogue and a more formal collaboration in the context of future funded research. Social-AYA was such an attempt. 4. Development of a plan and trajectory for future impact: Overall our findings suggest the need for age-appropriate tailored approaches to help AYAs with a cancer diagnosis. Interventions could and should be centred upon: (1) supporting educational establishments to develop and implement policies related to young students affected by cancer and raising awareness of cancer in this age group; (2) a similar path is envisaged for support in the workplace to increase awareness of challenges of cancer in this age group, and supporting the development and implementation of appropriate policies (such as the Macmillan toolkit); (3) A need for supportive practices in healthcare and in the general public related to: mental health, tailored psycho-social support, enhanced communications, and comprehensive care integration beyond treatment. Moreover we now know that interventions should particularly focus on people with fewer or impoverished social support networks, people who are not in education or employment at diagnosis and especially when they finish treatment, and people who display symptoms of poor mental health and health-related quality of life. Academic impacts: In part, some of our findings have been or are being actively used. We also endeavour to use these in a more comprehensive way by accessing further funding to develop, test, and implement interventions as desired by the service users and backed up by the evidence we have gathered. Categories of methods of using our findings are detailed below. 1. Academic impact in social and economic research to shift understanding and advance cross-discipline scientific method and theory. Our research has opened up several new research questions: (1) Which are the groups most at risk of having negative educational, employment, and financial outcomes so we can tailor interventions to them? (2) What interventions are most appropriate to improve psychological readiness for readjust to life following a cancer diagnosis? (3) When should re-adjustment interventions be offered to increase uptake and benefit to patients? (4) What type of psycho-social interventions are most suitable for cancer patients and when should these be offered? Some research paths have been closed off with the support of our findings. We now know that negative impacts of young-onset cancer once treatment is completed, that are powerful enough to impact upon formal quality of life in the short-term, are modest when compared to matched population comparators. However, we also found that negative effects are felt to a larger degree in the long term and that specific individuals experience substantial disruption. Therefore, any interventions we design need to be tailored to specific groups based on their level of risk. Finally, our qualitative findings (one already published, two in preparation) offer an overview of the social and emotional impact of having had cancer as well as potential avenues to intervene and support people who experience these negative effects. These support mechanisms, as suggested by the interviews with people with lived experience, combine a range of mechanisms that go beyond the state of the art of current clinical and psycho-social practice. 2. Collaborative research effects on impact Our STARS project was innovative through the close collaboration of multiple disciplines: medicine, sociology, health economics, and psychology. This enabled flexible knowledge exchange strategies to enable the dissemination of our results to all of these communities, while at the same time helping tailor how we presented our findings to a variety of audiences, including policy makers and charities. Through two large evidence triangulation meetings within the team where we offered the space and time for collaborative reflection on the research design, processes, findings and the overall new directions this work should take. This helped and maintained consistency in our work towards building a local a budding national infrastructure for leadership in working on adverse social late effects in young-onset cancer. 3. Knowledge exchange Seminars and workshops within each of the STARS senior researchers' departments and working groups have ensured the sharing of ideas and research evidence to a multi-interdisciplinary audience. They have also raised awareness of the importance of age-appropriate care, distinctiveness of AYA issues and importance of focussing on adverse social late effects within a variety of disciplines. 4. Conceptual impact (contribution to the understanding of policy issues and reframing debates) The work undertaken in STARS emphasised an important area where reframing the conversations and debates was necessary. While the psychological and social outcomes of cancer patients in general have always been emphasised as being affected by their diagnosis and treatment within the literature, there were few reports and evidence on the extent of social outcomes affected, a comprehensive way of assessing and monitoring these. While we knew psychological impacts were prevalent, the pathways taken by patients to resolve these were largely unknown. Similarly, support mechanisms accessed and worthwhile for patients for both types of outcomes were largely unknown. This project reframed the debate: we now know that more intensive, cross-disciplinary and cross-community support is needed to act upon educational and work outcomes with adapted interventions. We also know that support is needed for young people to re-establish social networks, relationships, and in some cases support is needed for their families. These factors are pivotal and perhaps crucial mechanisms (as outlined by our qualitative findings) in enabling or disabling young peoples' psychological and social adaptations. Finally and interestingly, mental health support is sought but seen as ineffective in its current format. In the absence of health service-approved alternatives participants sought their own sources of support or advised for new paths to be created. This has significantly shifted the debate on the types of interventions that would need to be piloted and whether these would need to be placed within the NHS, through community organisations, or between the two. 5. Instrumental impact (influence on the development of policy, practice, or services, shaping legislation and changing behaviour) and capacity building We will further seek avenues to support our desire for the design of an intervention with patients at its heart and having relevant charities engaged in this process, to then pilot it in England. We wish to focus on the adverse social late effects experienced by AYAs aged 16-39 who were the group targeted by the STARS project. We now know that internationally, these adverse effects can affect 40% of AYAs. The persistent negative impacts such as reduction in employment, financial burdens and reduced social engagement (which are seen at the diagnosis stage and then re-appear at some time following the end of treatment for most, and earlier for others) can result in increased emotional symptoms, poorer physical health and therefore poorer quality of life. Our next project will likely focus on delivering a stepped-care approach for AYAs' adverse social late effects. We will attempt to develop a means to measure and monitor patients' outcomes via online apps, develop tailored advice to be triggered based on their responses, which would include referrals to clinical and community services for persistent social needs. Once we find an appropriate funding stream to house this proposal we hope to pilot and evaluate the feasibility and efficacy of this initiative which should promote better health outcomes for AYAs while overcoming health disparities.
First Year Of Impact 2022
Sector Communities and Social Services/Policy,Healthcare
Impact Types Cultural

Societal

Policy & public services
 
Description Informal debate of the project at the NHS England Clinical Reference Group for Cancer in Children and Young people. This is the forum which on completion of the research will determine its funded adoption in the NHS.
Geographic Reach National 
Policy Influence Type Participation in a guidance/advisory committee
 
Description Living Lab
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Contribution to new or improved professional practice
 
Description Young-Onset Cancer English DoH Taskforce 2025
Geographic Reach National 
Policy Influence Type Participation in a guidance/advisory committee
Impact These will be realised as a result of the influence of the committee
URL https://www.gov.uk/government/news/children-and-young-people-cancer-taskforce-launched-to-save-lives
 
Description 70@70 NIHR Senior Nurse Research Leader Fellowship
Amount £140,000 (GBP)
Organisation National Institute for Health and Care Research 
Sector Public
Country United Kingdom
Start 03/2019 
End 03/2022
 
Description Living Labs
Amount £0 (GBP)
Funding ID NA 
Organisation Children's Cancer and Leukaemia Group (CCLG) 
Sector Charity/Non Profit
Country United Kingdom
Start 06/2025 
End 06/2026
 
Description Strong-AYA
Amount £5,000,000 (GBP)
Organisation Netherlands Cancer Institute (NKI) 
Sector Academic/University
Country Netherlands
Start 09/2022 
End 09/2027
 
Title STARS (Social Transitions and Reintegration Support) Survey and Interview topic guide 
Description Throughout 2020 we developed a survey which is aimed to evaluate the impact of a cancer diagnosis on social outcomes in teenagers and young adults. The questions/items within this survey are harmonized to allow for comparisons between the Understanding Society and BRIGHTLIGHT datasets. We also developed a novel interview topic guide which will complement the information collected through the survey. Both instruments have been developed in collaboration with our Young Advisory Group (see patient and public engagement section). Throughout 2021/2022 we plan to publish the process and methodology used to develop these instruments. 
Type Of Material Improvements to research infrastructure 
Year Produced 2020 
Provided To Others? No  
Impact None. Due to be used in data collection from 2021 onward. 
URL https://participant.qtool.irc.leeds.ac.uk/SectionofPatientCentredOutcomeResearch
 
Title STARS Survey 
Description Throughout STARS, for our quantitative data collection, we designed a bespoke survey to cover important socio-demographic, clinical, and patient-reported outcomes relevant to this project. This was done through the harmonisation of elements of surveys used in the UK Household survey (for alignment of the STARS predictors and outcomes with those evaluated in the non-cancer comparison group) and in BRIGHTLIGHT (for alignment with a nationally representative group of a TYA cancer population evaluated on similar outcomes between 2012-2014). The resulting STARS survey has been used as a tool to support the data collection in other projects, such as the currently ongoing STRONG-AYA project. Elements of the STARS Survey have been utilised in this project (and will be used in others) to help collect the needed data in a harmonised manner. 
Type Of Material Improvements to research infrastructure 
Year Produced 2019 
Provided To Others? No  
Impact Elements of the survey have been used in the currently ongoing STRONG-AYA project and we hope to use them more widely in other projects. 
 
Title Database harmonisation (Understanding Society) 
Description For Study 1, under the lead of our health economics co-investigator, we developed a new dataset of variables of interest for our selected study population, across the waves of Understanding Society survey. The way this is organised is informative for the handling and control of the other two datasets with which it will be merged for cross-population comparisons (i.e. Understanding society versus BRIGHTLIGHT cohort versus data resulting from our STARS study). 
Type Of Material Data handling & control 
Year Produced 2020 
Provided To Others? No  
Impact The structure of this dataset will be used for the harmonisation of data handling, control and analysis within our project which uses three distinct datasets. 
 
Title Longitudinal cohort study of the impact of specialist cancer services for teenagers and young adults on quality of life: outcomes from the BRIGHTLIGHT study 
Description Objectives: In England, healthcare policy advocates specialised age-appropriate services for teenagers and young adults (TYA), those aged 13 to 24 years at diagnosis. Specialist Principal Treatment Centres (PTC) provide enhanced TYA age-specific care, although many still receive care in adult or children's cancer services. We present the first prospective structured analysis of quality of life (QOL) associated with the amount of care received in a TYA-PTC Design: Longitudinal cohort study. Setting: Hospitals delivering inpatient cancer care in England. Participants: 1114 young people aged 13 to 24 years newly diagnosed with cancer. Intervention: Exposure to the TYA-PTC defined as patients receiving NO-TYA-PTC care with those receiving ALL-TYA-PTC and SOME-TYA-PTC care. Primary outcome: Quality of life measured at five time points: 6, 12, 18, 24 and 36 months after diagnosis. Results: Group mean total QOL improved over time for all patients, but for those receiving NO-TYA-PTC was an average of 5.63 points higher (95% CI 2.77 to 8.49) than in young people receiving SOME-TYA-PTC care, and 4·17 points higher (95% CI 1.07 to 7.28) compared with ALL-TYA-PTC care. Differences were greatest 6 months after diagnosis, reduced over time and did not meet the 8-point level that is proposed to be clinically significant. Young people receiving NO-TYA-PTC care were more likely to have been offered a choice of place of care, be older, from more deprived areas, in work and have less severe disease. However, analyses adjusting for confounding factors did not explain the differences between TYA groups. Conclusions: Receipt of some or all care in a TYA-PTC was associated with lower QOL shortly after cancer diagnosis. The NO-TYA-PTC group had higher QOL 3 years after diagnosis, however those receiving all or some care in a TYA-PTC experienced more rapid QOL improvements. Receipt of some care in a TYA-PTC requires further study. 
Type Of Material Database/Collection of data 
Year Produced 2020 
Provided To Others? Yes  
Impact we have obtained appropriate approvals to bring this dataset together with our own new data and understanding society, for analysis 
URL https://www.repository.cam.ac.uk/handle/1810/313510
 
Title STARS Dataset 
Description The STARS project resulted in a rich quantitative and qualitative dataset. As agreed in the our project proposal, we wish to deposit this under a 'controlled licence' with the UK Data Service to enable their use by other researchers. The datasets for sharing are prepared and ready to be uploaded on the UKDS platform. We commenced this process at an institutional level in April 2024. Difficulties in aligning the particulars of the UKDS licencing agreement with the contracting and information governance requirements of the University of Leeds have slowed this process. We are trying to overcome this hurdle with representatives of the UKDS and the University of Leeds contracting department for a smoother data depositing process for this dataset and any others in the future. We hope this contracting challenge will be resolved soon. 
Type Of Material Database/Collection of data 
Year Produced 2023 
Provided To Others? No  
Impact NA 
 
Description Expert Research Advisory Group (academic and charity) 
Organisation CLIC Sargent
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution March 2021 update: An additional collaboration with Southampton has been developed over 2020. The role of this collaboration in this project is to advise further on our qualitative data collection plans and interpretation of emerging data once qualitative data collection commences. We've had an additional consultation with Seattle Children's Hospital in November 2020 on the development of our survey in relation to the LIVESTRONG Study. Their experience in running a similar study to ours has benefitted the development of our survey and further collaboration is being discussed. March 2020: All members of the team - PI (Dan Stark), Co-Is (Angharad Beckett, Rachel Taylor, Oana Lindner, Adam Martin) and our clinical nurse specialist colleagues (Sue Morgan and Louise Soanes) offered input on who we can invite to be part of this external, independent group. On an ongoing basis we will have this neutral expertise from both qualitative/quantitative academic researchers AND patient representatives. As part of our yearly steering committee meetings we decided to involve a group of experts on either topic of our project which is not otherwise represented by our team members. The steering committee meeting in December 2019 brought together an expert on critical developmental psychology and qualitative research (Prof. Erica Burman, University of Manchester), Helen Gravestock as the third sector patient representative (Head of Research, Policy, and Campaigning, CLIC Sargent) and Dr. Gwyther Rees expert on measuring childhood well-being (Social and Economic Policy Manager/Research Director Children's Worlds - UNICEF Innocenti/University of York) These expert advisers will be offering guidance on relevant topics or challenges on an ongoing basis and will be part of our final workshop.
Collaborator Contribution March 2021 Update: Academic collaboration with Gwyther Rees and Erica Burman has continued well remotely. Prof. Erica Burman suggested additional developments to our interview topic guide while Dr Gwyther Rees offered advice and support for the development of our Statistical Analysis Plan. The new collaboration with the University of Southampton aims at the development of new fellowship project proposal which will be shaped by our findings within this project. Our consultation with Seattle on the LIVESTRONG Study has informed the data and findings available internationally, on outcomes similar to our own in the same target population. Due to difficulties in the charity sector over 2020 a more active collaboration with CLIC Sargent has been delayed. This has an effect on our activities related to influence on policy, practice and the public. As of December 2020 the situation in the charity sectors has stabilised, we recently had a meeting with CLIC Sargent in February 2021 to explore the potential impact of our study on policy and practice in the social sector. As dissemination of our study opening and recruitment becomes more relevant, additional connections are planned with the Leeds Cancer Charity, Trekstock, Macmillan, CoppaFeel, Breast Cancer Now, Shine, and Ellen MacArthur Cancer Trust and other similar organisations throughout 2021. The choice of collaborations will be shaped by the findings within the project. The purpose of these additional relationships will be to support and expand our participant and public engagement activities in the forthcoming year, and advertise/popularise the opening of the study and progress during our recruitment activities. March 2020: Prof. Erica Burman has introduced us to the concept of 'teratologies' and has put us in touch with a former patient who is also an academic researcher. She emphasised the important of us defining the concept of 'liminality' and a critical insight into using the concepts of 'normal' versus 'different' development trajectories. Helen Gravestock's contribution will be to help us recruit young people to our PPIE group which we are currently setting up. She has connected with us on various social media platforms on behalf of CLIC Sargent and will continue to help us disseminate our progress findings using these outlets. Dr. Gwyther Rees has provided important input and advice on developing our survey and choosing appropriate subjective well-being measures.
Impact March 2021 update: Multidisciplinary: epidemiology, social work Multidisciplinary: Developmental psychology, sociology, charity/policy
Start Year 2019
 
Description Expert Research Advisory Group (academic and charity) 
Organisation University of Manchester
Country United Kingdom 
Sector Academic/University 
PI Contribution March 2021 update: An additional collaboration with Southampton has been developed over 2020. The role of this collaboration in this project is to advise further on our qualitative data collection plans and interpretation of emerging data once qualitative data collection commences. We've had an additional consultation with Seattle Children's Hospital in November 2020 on the development of our survey in relation to the LIVESTRONG Study. Their experience in running a similar study to ours has benefitted the development of our survey and further collaboration is being discussed. March 2020: All members of the team - PI (Dan Stark), Co-Is (Angharad Beckett, Rachel Taylor, Oana Lindner, Adam Martin) and our clinical nurse specialist colleagues (Sue Morgan and Louise Soanes) offered input on who we can invite to be part of this external, independent group. On an ongoing basis we will have this neutral expertise from both qualitative/quantitative academic researchers AND patient representatives. As part of our yearly steering committee meetings we decided to involve a group of experts on either topic of our project which is not otherwise represented by our team members. The steering committee meeting in December 2019 brought together an expert on critical developmental psychology and qualitative research (Prof. Erica Burman, University of Manchester), Helen Gravestock as the third sector patient representative (Head of Research, Policy, and Campaigning, CLIC Sargent) and Dr. Gwyther Rees expert on measuring childhood well-being (Social and Economic Policy Manager/Research Director Children's Worlds - UNICEF Innocenti/University of York) These expert advisers will be offering guidance on relevant topics or challenges on an ongoing basis and will be part of our final workshop.
Collaborator Contribution March 2021 Update: Academic collaboration with Gwyther Rees and Erica Burman has continued well remotely. Prof. Erica Burman suggested additional developments to our interview topic guide while Dr Gwyther Rees offered advice and support for the development of our Statistical Analysis Plan. The new collaboration with the University of Southampton aims at the development of new fellowship project proposal which will be shaped by our findings within this project. Our consultation with Seattle on the LIVESTRONG Study has informed the data and findings available internationally, on outcomes similar to our own in the same target population. Due to difficulties in the charity sector over 2020 a more active collaboration with CLIC Sargent has been delayed. This has an effect on our activities related to influence on policy, practice and the public. As of December 2020 the situation in the charity sectors has stabilised, we recently had a meeting with CLIC Sargent in February 2021 to explore the potential impact of our study on policy and practice in the social sector. As dissemination of our study opening and recruitment becomes more relevant, additional connections are planned with the Leeds Cancer Charity, Trekstock, Macmillan, CoppaFeel, Breast Cancer Now, Shine, and Ellen MacArthur Cancer Trust and other similar organisations throughout 2021. The choice of collaborations will be shaped by the findings within the project. The purpose of these additional relationships will be to support and expand our participant and public engagement activities in the forthcoming year, and advertise/popularise the opening of the study and progress during our recruitment activities. March 2020: Prof. Erica Burman has introduced us to the concept of 'teratologies' and has put us in touch with a former patient who is also an academic researcher. She emphasised the important of us defining the concept of 'liminality' and a critical insight into using the concepts of 'normal' versus 'different' development trajectories. Helen Gravestock's contribution will be to help us recruit young people to our PPIE group which we are currently setting up. She has connected with us on various social media platforms on behalf of CLIC Sargent and will continue to help us disseminate our progress findings using these outlets. Dr. Gwyther Rees has provided important input and advice on developing our survey and choosing appropriate subjective well-being measures.
Impact March 2021 update: Multidisciplinary: epidemiology, social work Multidisciplinary: Developmental psychology, sociology, charity/policy
Start Year 2019
 
Description Expert Research Advisory Group (academic and charity) 
Organisation University of Southampton
Department School of Health Sciences
Country United Kingdom 
Sector Academic/University 
PI Contribution March 2021 update: An additional collaboration with Southampton has been developed over 2020. The role of this collaboration in this project is to advise further on our qualitative data collection plans and interpretation of emerging data once qualitative data collection commences. We've had an additional consultation with Seattle Children's Hospital in November 2020 on the development of our survey in relation to the LIVESTRONG Study. Their experience in running a similar study to ours has benefitted the development of our survey and further collaboration is being discussed. March 2020: All members of the team - PI (Dan Stark), Co-Is (Angharad Beckett, Rachel Taylor, Oana Lindner, Adam Martin) and our clinical nurse specialist colleagues (Sue Morgan and Louise Soanes) offered input on who we can invite to be part of this external, independent group. On an ongoing basis we will have this neutral expertise from both qualitative/quantitative academic researchers AND patient representatives. As part of our yearly steering committee meetings we decided to involve a group of experts on either topic of our project which is not otherwise represented by our team members. The steering committee meeting in December 2019 brought together an expert on critical developmental psychology and qualitative research (Prof. Erica Burman, University of Manchester), Helen Gravestock as the third sector patient representative (Head of Research, Policy, and Campaigning, CLIC Sargent) and Dr. Gwyther Rees expert on measuring childhood well-being (Social and Economic Policy Manager/Research Director Children's Worlds - UNICEF Innocenti/University of York) These expert advisers will be offering guidance on relevant topics or challenges on an ongoing basis and will be part of our final workshop.
Collaborator Contribution March 2021 Update: Academic collaboration with Gwyther Rees and Erica Burman has continued well remotely. Prof. Erica Burman suggested additional developments to our interview topic guide while Dr Gwyther Rees offered advice and support for the development of our Statistical Analysis Plan. The new collaboration with the University of Southampton aims at the development of new fellowship project proposal which will be shaped by our findings within this project. Our consultation with Seattle on the LIVESTRONG Study has informed the data and findings available internationally, on outcomes similar to our own in the same target population. Due to difficulties in the charity sector over 2020 a more active collaboration with CLIC Sargent has been delayed. This has an effect on our activities related to influence on policy, practice and the public. As of December 2020 the situation in the charity sectors has stabilised, we recently had a meeting with CLIC Sargent in February 2021 to explore the potential impact of our study on policy and practice in the social sector. As dissemination of our study opening and recruitment becomes more relevant, additional connections are planned with the Leeds Cancer Charity, Trekstock, Macmillan, CoppaFeel, Breast Cancer Now, Shine, and Ellen MacArthur Cancer Trust and other similar organisations throughout 2021. The choice of collaborations will be shaped by the findings within the project. The purpose of these additional relationships will be to support and expand our participant and public engagement activities in the forthcoming year, and advertise/popularise the opening of the study and progress during our recruitment activities. March 2020: Prof. Erica Burman has introduced us to the concept of 'teratologies' and has put us in touch with a former patient who is also an academic researcher. She emphasised the important of us defining the concept of 'liminality' and a critical insight into using the concepts of 'normal' versus 'different' development trajectories. Helen Gravestock's contribution will be to help us recruit young people to our PPIE group which we are currently setting up. She has connected with us on various social media platforms on behalf of CLIC Sargent and will continue to help us disseminate our progress findings using these outlets. Dr. Gwyther Rees has provided important input and advice on developing our survey and choosing appropriate subjective well-being measures.
Impact March 2021 update: Multidisciplinary: epidemiology, social work Multidisciplinary: Developmental psychology, sociology, charity/policy
Start Year 2019
 
Description Expert Research Advisory Group (academic and charity) 
Organisation University of York
Country United Kingdom 
Sector Academic/University 
PI Contribution March 2021 update: An additional collaboration with Southampton has been developed over 2020. The role of this collaboration in this project is to advise further on our qualitative data collection plans and interpretation of emerging data once qualitative data collection commences. We've had an additional consultation with Seattle Children's Hospital in November 2020 on the development of our survey in relation to the LIVESTRONG Study. Their experience in running a similar study to ours has benefitted the development of our survey and further collaboration is being discussed. March 2020: All members of the team - PI (Dan Stark), Co-Is (Angharad Beckett, Rachel Taylor, Oana Lindner, Adam Martin) and our clinical nurse specialist colleagues (Sue Morgan and Louise Soanes) offered input on who we can invite to be part of this external, independent group. On an ongoing basis we will have this neutral expertise from both qualitative/quantitative academic researchers AND patient representatives. As part of our yearly steering committee meetings we decided to involve a group of experts on either topic of our project which is not otherwise represented by our team members. The steering committee meeting in December 2019 brought together an expert on critical developmental psychology and qualitative research (Prof. Erica Burman, University of Manchester), Helen Gravestock as the third sector patient representative (Head of Research, Policy, and Campaigning, CLIC Sargent) and Dr. Gwyther Rees expert on measuring childhood well-being (Social and Economic Policy Manager/Research Director Children's Worlds - UNICEF Innocenti/University of York) These expert advisers will be offering guidance on relevant topics or challenges on an ongoing basis and will be part of our final workshop.
Collaborator Contribution March 2021 Update: Academic collaboration with Gwyther Rees and Erica Burman has continued well remotely. Prof. Erica Burman suggested additional developments to our interview topic guide while Dr Gwyther Rees offered advice and support for the development of our Statistical Analysis Plan. The new collaboration with the University of Southampton aims at the development of new fellowship project proposal which will be shaped by our findings within this project. Our consultation with Seattle on the LIVESTRONG Study has informed the data and findings available internationally, on outcomes similar to our own in the same target population. Due to difficulties in the charity sector over 2020 a more active collaboration with CLIC Sargent has been delayed. This has an effect on our activities related to influence on policy, practice and the public. As of December 2020 the situation in the charity sectors has stabilised, we recently had a meeting with CLIC Sargent in February 2021 to explore the potential impact of our study on policy and practice in the social sector. As dissemination of our study opening and recruitment becomes more relevant, additional connections are planned with the Leeds Cancer Charity, Trekstock, Macmillan, CoppaFeel, Breast Cancer Now, Shine, and Ellen MacArthur Cancer Trust and other similar organisations throughout 2021. The choice of collaborations will be shaped by the findings within the project. The purpose of these additional relationships will be to support and expand our participant and public engagement activities in the forthcoming year, and advertise/popularise the opening of the study and progress during our recruitment activities. March 2020: Prof. Erica Burman has introduced us to the concept of 'teratologies' and has put us in touch with a former patient who is also an academic researcher. She emphasised the important of us defining the concept of 'liminality' and a critical insight into using the concepts of 'normal' versus 'different' development trajectories. Helen Gravestock's contribution will be to help us recruit young people to our PPIE group which we are currently setting up. She has connected with us on various social media platforms on behalf of CLIC Sargent and will continue to help us disseminate our progress findings using these outlets. Dr. Gwyther Rees has provided important input and advice on developing our survey and choosing appropriate subjective well-being measures.
Impact March 2021 update: Multidisciplinary: epidemiology, social work Multidisciplinary: Developmental psychology, sociology, charity/policy
Start Year 2019
 
Description Leeds Institute of Health Sciences - Doctorate in Clinical Psychology 
Organisation University of Leeds
Department Leeds Institute of Health Sciences
Country United Kingdom 
Sector Academic/University 
PI Contribution The qualitative aspect of the STARS project designed a novel interview topic guide designed in collaboration with the Young Advisory Group (a group of young people with the lived experience of cancer). It focused on how the social integration outcomes (work, education, relationships) were disrupted for young people from the point of diagnosis and beyond, what sort of support mechanisms were available to them during this time and what could be done better. On the basis of the topics explore in STARS, a new project was designed by a clinical psychology doctorate candidate under one of the STARS senior researchers' supervision. This project explored the long-term emotional and social needs of people treated for cancer as a TYA. Distinctly from STARS it looked into the their needs for support at more than 5 years post-treatment, whereas STARS focused on experience up to 5 years post-treatment. The doctoral candidate successfully completed this work, submitted their thesis in July 2024 and was awarded the degree of Doctor of Clinical Psychology in September 2024. Their thesis highlights interesting overlapping findings to the ones in STARS but also some differences in support needs for patients who are further down their cancer journey compared to those included in STARS.
Collaborator Contribution Extension of the STARS-inspired topic guide and interviews to a separate young adult patient group in long-term follow-up (5+ years) after a cancer treatment.
Impact Multidisciplinary: Medicine and Clinical Psychology
Start Year 2019
 
Description PanCare4AYA 
Organisation Princess Máxima Center
Country Netherlands 
Sector Hospitals 
PI Contribution As part of the funding call mentioned above (Horizon Europe), through the collaborations with the multiple countries, the University of Leeds was invited as a partner in other projects aiming to access parallel funding streams. One of these, led by the Princess Maxima Centre in Utrecht, was funded. It will focus on developing, testing, and scaling-up evidence-based screening methods for the early detection of late effects in AYA cancer survivors as part of Survivorship Care to improve their health and quality of life.
Collaborator Contribution Intellectual contribution to a successful grant application.
Impact N/A
Start Year 2024
 
Description STRONG-AYA, new Horizon Europe proposal, and local multidisciplinary collaborations 
Organisation Netherlands Cancer Institute (NKI)
Country Netherlands 
Sector Academic/University 
PI Contribution This work is contributing to an application to Horizon Europe, to extend our area of work internationally. This work is contributing to another UK project in this field, using other linked datasets with longer term follow-up. This work resulted in a collaboration between medical and social (sociology, health economics) sciences which will be lead to further research.
Collaborator Contribution On of the collaborations that came out of the STARS project is the STRONG-AYA project. STRONG-AYA brings together an international multi-disciplinary Consortium across seven European countries, led by the Netherlands Cancer Institute (NKI). The Consortium is currently composed of academic research organisations, clinical partners, stakeholder and patient organisations, and a consulting company. It seeks to Develop a Core Outcomes Set (COS) specifically for adolescents and young adults with cancer, Implement it across several national European healthcare systems, and to make available and Disseminate the COS analyses, their interpretation and implications to local and pan-European stakeholders. As a spin off from STARS and STRONG-AYA our research group, in collaboration with the Netherlands Cancer Institute and others, is now seeking to apply for further Horizons Europe funding focusing on the 'survivorship' or post-treatment management of cancer in adolescents and young adults. The collaborations set up locally with sociology and health economics will also feed into this proposal where one of the focuses will be the development and implementation of interventions with support from social sciences. Conversations - locally and internationally - are underway for this new funding stream.
Impact Not yet applicable
Start Year 2022
 
Description Social-AYA 
Organisation Open University
Country United Kingdom 
Sector Academic/University 
PI Contribution 1. Social-AYA is a novel project proposal which was submitted to the Horizon Europe call Research and Innovation Actions to support the implementation of the Mission on Cancer (HORIZON-MISS-2024-CANCER-01). It was submitted to the funder on 17th September 2024. It directly built upon the findings from the STARS by proposing to design, implement, and evaluate an intervention to manage the adverse social late effects we identified in our participants, while accounting for the varied experiences they reported. As part of the design and methodology of the project, it also aimed to establish a 'Living Lab' to allow participants with a lived experience to further tailor the details and content of our proposed intervention. While the proposed project was rated very highly by the European Commission (a score of 14 out of 15) it was placed on a reserve list with a low likelihood of becoming funded. However, this work brought together a large group of experts and institutions with an interest in acting upon the social adverse effects experienced by young people diagnosed with cancer. It also helped us design, in detail, the specifics of our next project which will be an intervention to address the adverse social late effects we observed in our STARS study. We will aim to re-submit this to a different funder. In terms of collaborations, the work on Social-AYA, a direct spin-off of STARS, helped us develop collaborations with 23 new partners across 11 countries, with expertise across a variety of areas. Discussions are ongoing to attempt to re-apply for a different funding stream with any of our new collaborators. We would like to attempt to design the intervention we proposed and to implement and test it in an innovative pilot randomised trial.
Collaborator Contribution • project management: Accelopment, Switzerland; • patient advocacy groups: Childhood Cancer International, Youth Cancer Europe, Pancare; • charitable organisations: Young Lives VS Cancer, Europa Donna; • IT solutions for patient-reported outcome data capture: ESD and Epiconcept; • Universities/Academic centres: Innsbruck University, Open University, Oslo University, University of Southampton, Maastricht University; • Medical centres who care for AYAs with a cancer diagnosis: Italy, France, Netherlands, Slovenia, Germany, Hungary.
Impact N/A
Start Year 2024
 
Description Strong-AYA 
Organisation Netherlands Cancer Institute (NKI)
Country Netherlands 
Sector Academic/University 
PI Contribution The team delivering the current ESRC grant I am reporting on have made specific scientific contributions to the design, implementation plan and successful funding of a new pieice of work in the social and clinical outcomes of young-onset cancer to EU Horizon Europe programme HORIZON-HLTH-2021-CARE-05-02
Collaborator Contribution We will provide scientific leadership of several programmes, provide and collect data, and lead in several sustainability processes in this new research. Partners in the Netherlands, France, Italy, Poland, Belgium and Roumania will also contribute data, scientific expertise and lead other elements.
Impact Successful recent grant funding
Start Year 2021
 
Description Strong-AYA 
Organisation University of Manchester
Country United Kingdom 
Sector Academic/University 
PI Contribution The team delivering the current ESRC grant I am reporting on have made specific scientific contributions to the design, implementation plan and successful funding of a new pieice of work in the social and clinical outcomes of young-onset cancer to EU Horizon Europe programme HORIZON-HLTH-2021-CARE-05-02
Collaborator Contribution We will provide scientific leadership of several programmes, provide and collect data, and lead in several sustainability processes in this new research. Partners in the Netherlands, France, Italy, Poland, Belgium and Roumania will also contribute data, scientific expertise and lead other elements.
Impact Successful recent grant funding
Start Year 2021
 
Description TYA Working Group, School of Medicine, University of Leeds 
Organisation University of Leeds
Country United Kingdom 
Sector Academic/University 
PI Contribution March 2021 update: COVID has had an impact through a pause to group activities. Our next meeting is now planned for March 2021. While group activities have been scarce, individual members of this group have had a range of successes in terms of outputs and grants on COVID-related research. Both the Research Fellow and Data manager employed on this project are developing further proposals with support and as part of this collaboration. Small working group composed of clinicians, psychologists, epidemiologists, and methodologists. We aim to develop ideas and proposals on taking the Teenage and Young Adult work forward and ensuring impact. The goal is to share information that improves the quality and productivity of research in Leeds concerning Teenagers and Young Adults with cancer, and develop integrated research studies in this field. The core membership of this group includes 2 of our team members, Dan Stark (PI) and Sue Morgan (Clinical nurse specialist, CNS), and Co-investigator/Research Fellow (Oana Lindner). This group meets every 3 months or so for around 2 hours. Dan Stark offers experience and expertise on teenage and young adult oncology, clinical trials, intervention studies and related methodologies, clinical and non-clinical student or trainee education, and policy impact. Sue Morgan offers insights into patient involvement and engagement, nursing experience and expertise with this age group. Oana Lindner offers input on the psychological and social factors influencing outcomes in teenagers and young adults, methodological considerations, and psychology and sociology education.
Collaborator Contribution March 2021 update: The epidemiologist/analyst in this collaboration has significantly contributed to the development of the quantitative component of a PhD studentship, due to be submitted in 2021. The co-I/Research Fellow contributed to the qualitative element of the PhD studentship. The PhD work on mental health in young people with cancer of one of the junior doctors in this group on is contributing to the development of an Advanced Fellowship application. One of the oncology clinicians in this team is co-supervisor on the doctoral project of a clinical psychologist. Currently the PI (DS) has led the development and and application of a Stage 1 NIHR programme for a hybrid interventional study. As this preliminary application was successful, the Stage 2 application is now being prepared. He also led another application to the NIHR for a clinical academic fellowship proposal. The co-I/Research Fellow (OL) has contributed to this. Based on the ESRC work, OL led and provided guidance for wider patient involvement and engagement with any resulting studies by creating a Strategy to be used by the team members.
Impact Not applicable
Start Year 2020
 
Description The Living Lab 
Organisation Children's Cancer and Leukaemia Group (CCLG)
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution One of the methodologies we proposed within our Social-AYA project to guide the development of our intervention tools in conversation with all stakeholders, especially participants with the lived experience, was the development of a Living Lab (https://enoll.org/). These are open innovation dynamic ecosystems encompassing multi-stakeholders involved in providing or using a service, information technology, and knowledge systems. Their purpose are to dynamically resolve problems by collaboratively identifying problems, questions, troubleshooting solutions, and deciding upon and testing solutions for the benefit of stakeholders. While Living Labs have been successfully implemented in other areas, to tackle climate or transportation problems, they are a relatively new concept as a healthcare solution. The aim of this Living Lab is to offer young people living with and after TYA-onset cancer across the United Kingdom the opportunity to contribute their expertise, adapted to the reality of all our daily lives, when co-developing innovative solutions to challenges in their cancer care. It will enable Young People to live better, both during and after their illness. This will also be a useful current and future space for researchers, charities and healthcare professionals to deliver their work with colleagues and young people. We envisage it as a platform which will address and try to problem-solve and design intervention for the adverse social late effects we identified in STARS but to also go beyond these findings by allowing participants to further define other problems - related to TYA-onset cancer healthcare - which need a solution. As Social-AYA was not funded, we decided to access another funding stream in collaboration with our new partners - Open University. A funding proposal was submitted to the Children & Young People's Cancer Association (CCLG) and, if funded, we hope to also be able to involve Young Lives vs Cancer in our activities.
Collaborator Contribution OU: project partners, intellectual contribution and insights into the development of the Living Lab. CCLG: potential project funders.
Impact N/A
Start Year 2024
 
Description The Living Lab 
Organisation Open University
Country United Kingdom 
Sector Academic/University 
PI Contribution One of the methodologies we proposed within our Social-AYA project to guide the development of our intervention tools in conversation with all stakeholders, especially participants with the lived experience, was the development of a Living Lab (https://enoll.org/). These are open innovation dynamic ecosystems encompassing multi-stakeholders involved in providing or using a service, information technology, and knowledge systems. Their purpose are to dynamically resolve problems by collaboratively identifying problems, questions, troubleshooting solutions, and deciding upon and testing solutions for the benefit of stakeholders. While Living Labs have been successfully implemented in other areas, to tackle climate or transportation problems, they are a relatively new concept as a healthcare solution. The aim of this Living Lab is to offer young people living with and after TYA-onset cancer across the United Kingdom the opportunity to contribute their expertise, adapted to the reality of all our daily lives, when co-developing innovative solutions to challenges in their cancer care. It will enable Young People to live better, both during and after their illness. This will also be a useful current and future space for researchers, charities and healthcare professionals to deliver their work with colleagues and young people. We envisage it as a platform which will address and try to problem-solve and design intervention for the adverse social late effects we identified in STARS but to also go beyond these findings by allowing participants to further define other problems - related to TYA-onset cancer healthcare - which need a solution. As Social-AYA was not funded, we decided to access another funding stream in collaboration with our new partners - Open University. A funding proposal was submitted to the Children & Young People's Cancer Association (CCLG) and, if funded, we hope to also be able to involve Young Lives vs Cancer in our activities.
Collaborator Contribution OU: project partners, intellectual contribution and insights into the development of the Living Lab. CCLG: potential project funders.
Impact N/A
Start Year 2024
 
Title Social-AYA 
Description The Social-AYA project we submitted to HORIZON Europe suggests an innovative clinical trial as an intervention for the adverse social outcomes observed in STARS. While this has not yet been funded, we are looking into other funding streams to attempt to design, implement and evaluate this. 
Type Preventative Intervention - Behavioural risk modification
Current Stage Of Development Initial development
Year Development Stage Completed 2025
Development Status Actively seeking support
Impact New collaborations and partnerships; designed the pathway to a novel intervention to pilot and evaluate once a source of funding is identified and accessed. 
 
Description ESRC Festival of Social Science: Supporting Young People Who Have an Illness 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact What: We designed and hosted a patient, public and professional engagement and dissemination event centred upon the 'Impact of cancer diagnosis on social reintegration' ESRC research Programme (Grant ES/S00565X/1)

The event had as its by-line 'When you know or you meet a young person living with or after cancer or another illness, what simple things can you do to support them?'
The event was led by Professor Stark, working in particular with:
• Clinicians in Leeds' NHS Cancer Services
• Charities: Local (Yorkshire and the North East) staff of the Teenage Cancer Trust (who contributed some funds as well as engagement) and Young Lives Vs Cancer charities respectively
• Young people living with and after cancer in Leeds and elsewhere
• Angharad Beckett and colleagues from Social Sciences, Uni Leeds
• Oana Lindner a post-doc in Leeds Institute of Medical Research
• Adam Martin from Leeds Institute of Health Sciences, Uni Leeds
• Alice O'Grady and colleagues from School of Performance, Uni Leeds
• The Festival organisers, notably Cheryl Harris, Celine Roblin-Robson and the Uni Leeds Internal Comms team
• The recently founded CHORAL collaboration within University of Leeds

The content included:
1. Testimony from a senior healthcare professional (Lead nurse for TYA cancer services, Leeds) about their experiences of social integration after cancer. We planned testimony from a young person undergoing cancer treatment and their partner?, but they were unable to contribute at short notice due to issues beyond their control. Now, we plan to record a conversation with them to provide through our web page for the Patient-Centred Outcomes Research group https://pcor.org.uk/tya/.
2. Outline results from the project to date.
3. Break-out groups online and in person to enable a wider range of more detailed personal experiences and perspectives.
4. Quotes from young people who took part in the research
'What is normality?'
'So I mean, some of that pressure came from meI just want to get back to normal as quickly as possible. And I kind of really pushed myself into ita little bit too hard not realizing the long term impact (F, 25+, Lymphoma, London)
Friends (understanding)'
'one of my closest, closest friends, my best friend in the world () there was a massive disconnect because I think she came to she came to visit me once and I think she wasn't quite expecting the gravity of it all. (F, 16, Lymphoma, Leeds).'

5. Videos previously produced in collaboration with the TYA research and clinical teams. These short vignettes were parts of existing drama performances developed in University of Leeds, through international collaborative research between the School of Performance and Cultural Industries at the University of Leeds and Royal Roads University in Canada. Young people locally and internationally translated their experience into a creative format. They used dramatic performance to express and understand their reveal the unique insights into how it feels to be a young person with cancer experiences. Short performance videos were crafted in 2021 by young people who have undergone cancer treatment, to illustrate their experiences of cancer. Excerpts were selected to highlight social issues within the impacts of living with and after cancer.
6. We shared the content generated in the breakout groups, sources of existing information about support for TYA living with and after cancer, and next steps
7. We shared existing resources created to help all stakeholders manage these pressures

Who: We shared the opportunity in advance, through networks of our own, wider University of Leeds academic and public engagement networks, the engagement networks of the Festival of Social Sciences, local and national charities for young people with illness, local employers and educational provider networks.
We sought to, and succeeded in engaging:
• Young people aged 15-39 living with and after cancer or another illness
• The loved ones and carers of young people living with and after cancer
• Young people who don't have an illness, but would like to find out more about how to support young people they know if and when they are ill.
• Employers who wish to help young people to work with them during or after illness
• Schools, colleges and universities who wish to help young people to study and learn with them during or after illness.
• Community-based organisations (such as charities, societies and informal groups) that wish to help further.

To achieve this:
• We prepared, created and shared brief content to engage them with the event, and fuller information resources to explain in further detail for those wishing that, adapted to the perspectives of different participants.
• We engaged 10 facilitators, from healthcare professional and academic backgrounds, to support the successful running of the event and breakout groups both online and in-person.
• We engaged enhanced information technology support to facilitate the successful event experience, online in particular, as the University of Leeds support available was not sufficient.

Where: Parkinson Building, University of Leeds, as part of the ESRC Festival of Social Sciences

How: Hybrid - the meeting was held simultaneously in person and online on Zoom. We provided the same content and agenda in both. An illustrator in the room created visual materials in real time about what they heard said and the issues that raises.
When: Wednesday 8th November 2023, 1730 to 1930
Why:
Primarily: We wanted the public to help to make the lives better, of young people living with and after cancer. Young people get cancer. Thankfully most survive nowadays. But the consequences for their future lives are often huge. There are relatively simple things the general public, employers, educators and our community organisations can improve, to better support these young people when they are living with or after cancer. We wished to share our recent large-scale research about what these are.

Secondarily: We are well advanced in our analyses of the research programme data for the 'Impact of cancer diagnosis on social reintegration' project. Having consulted with and implemented that project with TYA and health care professionals, we have conducted detailed analyses for study 1 ' Social trajectories in the well population and those with non-cancer illnesses', and study 2 (comparing cancer to the well population 2014-2017), initial framework analyses of qualitative data in study 3 (cancer social outcomes 2019-23), are preparing for detailed quantitative analyses for study 3 and the final shape and form of study 4 (a multidimensional risk stratification for AYA with cancer). We wished to triangulate our current observations with the lived experiences of experts and use that to better plan our next analyses. We undertook to the funder in our project to plan substantial engagement and dissemination events throughout the lifespan of this project, directed at the general public, patients, clinical, managerial, and academic professionals, and third sector stakeholders.
Thirdly: this event enabled further engagement across the range of current and potential future collaborators in this field, to strengthen our work in dissemination, policy and future research.
We aimed to give attendees
- A greater confidence in dealing with this situation when it arises, as it does for us all.
- A wish to be able to give back constructively to members of their community who can feel and be socially excluded.
- A wish to help their organisation be more constructive for young people who are, or have been, unwell.
Findings:
The event was accessed by 40 people during it, 14 in person and the remainder online. Of those 6 were healthcare service users, 7 were educators, 6 were from community organisations and 21 were healthcare professionals. We did not attract any attendees from employers organisations.

Before the event there were 19 engagements and 1201 impressions on X/Twitter. During the event there were 63 engagements and 528 impressions.

Our recent research on many thousands of adolescents and young adults in Leeds, London and elsewhere in the UK aged 15-39 showed that a number of the challenges young people face with and after cancer (and other illnesses) are 'social'. That means the young people find returning to mixing with people who don't have cancer is difficult. This might be in their social lives but also in employment, education or even their family.

What we have also identified is that simple awareness and minor actions may reduce this problem. What these young people need is not particularly complicated or clever - a few simple things anyone or any organisation can do could really help. I wanted to share this learning with the community in Leeds, hear their experiences and use their experience as part of how we use this research to make a difference.

During the event:
The rationale for the study was well accepted as critically important to young people.
The comparative nature of the study, to those with other illnesses and no known illnesses was important, but nuanced because of the range of chronicity of different illnesses. Cancer tends, with some exceptions, to be a relatively brief episode of severe illness, with either recovery or death. Several other young-onset illnesses are chronic and do not resolve in this manner. Some are episodic, as cancer can also be.
We noted, after young-onset illness;
• Delays and non-completion of educational achievements when living with illness. These vary substantially by gender and illness type, so seem likely to be tractable for improvement.
• More young people after cancer (than in the general population) embracing further and higher education after they complete cancer treatment. Those not in education, employment or workplace training with cancer are 8 times more likely to enter education than non-illness comparators. Most were exiting progressively (i.e. into a higher level of education not to re-take previous education missed)
• Less employment and income in those living with many (but not all) illnesses, especially in women, and some of it persisting until the age of 40 at least.
• Fewer with illness are living with their parents, although more moving back into the parental home
• Variation by illness group in the proportion entering a long-term relationship, which varies by gender. More relationship breakdown (2.3 fold increase) after cancer in particular, compared to the non-illness population comparators.
• A huge increase in the prevalence of mental health problems, at clinical disorder level, comparing young people living after cancer in 2014-2017 to 2019-2022.
• Friendship problems may be underpinned often by a lack of continuing shared perspectives and understanding.

Discussions in large and small groups yielded key further observations:
Huge current levels of financial challenge, with some counterbalancing supports (but not equitably available)
We need to conduct analyses that detect and value our data heterogeneity:
- The age ranges included and not treat these as homogeneous.
- Impact of race and socio-economic group on social parameters
- Length of stays in hospital may relate to social challenges

Support available to young people with cancer is not equal, in particularly in disadvantaging those aged 25+
To understand the factors which may predict adverse or positive social outcomes:
- When does illness strain a relationship and when does it bring them together?
- Illness as a positive - such as overcoming social anxiety
- How much does Fertility (or fears about it) impact social engagement?
How strong is the relation of Mental Health to social wellbeing, especially for those influenced by intersectionality:
o Services are not delivering on existing MH promises through formal systems. Are other initiatives, through drama or other approaches, realistic and effective?
o General MH services in our communities are not well suited to manage MH problems in serious physical illness.

There are gendered issues prominent in these findings. These sit counter to clinical experience of better care engagement in females, so imply intersectional problems or bigger societal issues
Hard to pre-empt problems accurately in clinical experience, although structured assessments exist.
Tailored education support might extend from schooling and university to adult learning programmes
The plasticity of the developing brain may be relevant to integration. This might be studied in future, in psychological and physiological research designs
Young people may benefit from preparing for transitions in treatment earlier, guided and steered by health services, to prepare them for social integration. It may also help to soften the end of treatment as a precise point in time, with courses preparing for that which start earlier.
Comparison is a natural element of being a young person, but not constructive, and particularly promoted by much social media discourse.
Employers are pressurising young people in relation to their performance at work, while not understanding the lived experience of the patient. This may need review of the guidelines and legal requirements upon employers, and if that is insufficient, then national recognition.
Young people find it hard to ask for support in social issues - reaching out may feel intrusive upon the care available to others. It may be better to plan these discussions routinely, to identify risk and intervene early, not only deliver them in reaction, when help is sought because a problem has occurred and become major enough for someone to ask for help.

Implications:
The hybrid meeting enabled wider engagement and involvement, in particular in relation to cancer patients concerned about exposure to infection. The preparatory materials provided by the ESRC FOSS on hybrid meetings (14th September 2023) were applied and very useful. The pre-event dissemination of the opportunity was widespread and varied, but not all means were equally successful. Sarah Smizz, a fabulous illustrator in the room, created materials about what they heard said and the issues it raises.

Our statistical matching technique (Propensity matching) have achieved good matching and improved like-for-like comparisons.
Relationship breakdown is sometimes and positive and sometimes a negative change in social integration. Separating these in our quantitative (e.g. based upon Quality of Life) and qualitative analyses of mechanisms may be important now or in future.
Educational providers, where problems were identified by young people, varied in their:
• Sympathy and awareness e.g. missed time, exams, marking (instead of grades assigned automatically), payment for course and accommodation
• Awareness of cancer (seemed higher in universities than colleges/schools, but not systematically measured)
• Young people identified the critical role of NHS staff (Often actually charity-funded) to help navigate the bureaucracy of education when unwell
• Young people very often re-evaluate their educational and life goals when living with illness. Some choose to change education pathway- this needs to be normalised for patients, carers and organisations, as it is not constructive to frame changing subject or aims as a sign of failure.
• Everyone should allow people living after cancer to determine whether and when they talk about it.
• Remember it is not always known how long successfully treating an illness will take.
Young people living with or after illness need to be offered additional support, in education, places of work, friends and families.
• Young people feel an internal 'pressure' to return to 'how they were before' and this pressure over time many reflect did not help them socially re-integrate.
• But not be expected to 'take it or leave it' - leave the offer open until people have processed information and are ready to anticipate and act upon the social challenges ahead of them.
Clear concise information about workplace and educational policies, expectations, rights and routes to support are helpful.
• Good record-keeping enable promises to be kept if managers change roles.
• Preparation, understanding and awareness in staff, encouragement to disclose about the illness in managed stages (with colleagues, managers, educators, peers and others).

Young people may benefit from mental health support from youth workers and others within health services, even if they seem OK, to give them practical tips and skills to return to their social environment. Structured mental and social health interventions may be required for all and starting from the point of diagnosis, in preparation for social re-integration with or after illness. These may include help to leave home again, and introducing more flexibility into the natural young persons' feeling of comparison, and of hurry to 'get back on track'.
It may also help to soften the end of treatment as a precise point in time, with courses preparing for that which start earlier.

Next steps
Multivariable analyses of key associations, and further triangulation between the quantitative and qualitative data based upon the key observations in this event
The fuller videos of experiences should be made available more widely online, within any participant and/or funder restrictions
Press-Media activity
Further similar re-engagements, at key future points such as Pint of Science May 2024
Engagements to further promote diversity
Engagements with policy-makers as data becomes available of relevance to them
Exploratory further focussed engagements with local employers- what will work for them?
- Self-employment is particularly challenging in older AYA

Specific further engagements with educational organisations, where we have identified specific further areas of work. There seems to be very beneficial work to be done on educational re-engagement after a health shock, and a beneficial message to educational providers, that there is a great deal of good they can do in this group.
Year(s) Of Engagement Activity 2023
 
Description Our research outline and pragmatic plan was presented orally at the Teenagers and Young Adults with Cancer Professional meeting. We received offers of collaboration, support and methodological advice. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Our purpose was to disseminate the award and study aims and objectives. see above otherwise
Year(s) Of Engagement Activity 2019
URL https://www.tyac.org.uk/events/book/tyac-conference-2019/8418?OccId=12227
 
Description Patient & Public Engagement and Young Advisory Group project co-production 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact We created the Young Advisory Group for this project - a group of young people with the lived experience of cancer who are contributing actively to the co-development and delivery of this project.

We made significant progress with the Patient engagement and involvement activities. Through 5 online/remote workshops working with five young adults (over 2020) and a 6th workshop in February 2021, we co-developed the project identity (name and logo). The name of the project, resulting from this collaboration is STARS: Social Transitions and Reintegration Support. The logo is currently being produced with support from a professional graphic designer.
Our young advisors have contributed and advised on the development of the research methods/tools to be used in this project, namely the online and hardcopy version of the Survey and the interview topic guide.

Looking forward, we will be focusing on the artistic output of the project, workshops for the career development of our Young Advisors, increasing inclusivity and reach within this groups and social media communications. A seventh workshop is being planned to discuss research methods related to this project and social media interactions have been planned.

Academic/professional engagement:
In February 2021 we also had a discussion with a social care charity for adolescents and young people with cancer, CLIC Sargent, to discuss their methods of evaluating and acting upon social integration risks in this group. This will influence our methods of engaging with our young person audience and the policy and charity sectors once findings from our project emerge.

COVID significantly influenced the number and type of activities in which we were able to participate.
In the beginning of 2020 we submitted 2 abstracts to the Global AYA Cancer Congress which had been accepted. Shortly after March 2020 the congress was cancelled due to COVID.

Further, pauses and delays in regulatory processes have slowed down the governance and licensing processes for data collection, putting a strain on our ability to present our findings.

Hence, most of our additional dissemination and engagement activities planned for 2020 will now have to take place one year later, in line with the 12 months delay in our data collection.
Year(s) Of Engagement Activity 2020,2021
 
Description Patient and Public engagement process meetings 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact we ran a series of workshops sharing the progress in our work and receiving service user feedback to promote retention of subjects and improve our impact
Year(s) Of Engagement Activity 2021
 
Description Social outcomes in AYA with a chronic illness Pint of Science 13/05/2024 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Dissemination of results to general public
Year(s) Of Engagement Activity 2024