Title: Impact of cancer diagnosis on social reintegration
Funder: Economic and Social Research Council

Abstract: Objective 1. Study 1 (Months 1-18). To understand which socio-demographic factors explain differences in social integration trajectories in young people with and without cancer. Meeting this objective within the first of the 3 studies encompassed by our proposal, will involve the secondary data analysis of existing databases. We will use the ESRC-funded British Household Panel Survey and the UK Household Longitudinal Study databases (Understanding Society). They contain annual longitudinal data on educational, employment, and social networks in people with and without a cancer diagnosis. The socio-demographic factors we will use to describe the variance in social integration outcomes are age, sex, marital status, deprivation level, and geographical region. These secondary data analyses will help establish the trajectory of social integration in young people without cancer, forming the 'counterfactual' against which we will compare merged data from Studies 2 and 3. Objective 2. Study 2 (Months 1-18). To explain which clinical factors influence social reintegration trajectories in young people with cancer, over and above socio-demographic factors. This second study involves the secondary data analysis of the National Institute of Health Research-funded BRIGHTLIGHT cohort study. This objective will facilitate comparisons on social integration trajectories between adults aged 16-39 in the general population without a cancer diagnosis and patients with various cancer diagnoses across the country. This will help establish the value of clinical data in defining the risk of poor social reintegration following cancer treatment and enrich our understanding of the involvement of psychosocial factors and patient-reported outcomes when linked to the new cohorts and factors collected in Study 3. Objective 3. Study 3 (Months 9-30). To identify which other factors (patient-reported outcomes, psychosocial factors, and emerging factors) further explain social reintegration differences in young people diagnosed with cancer. We will undertake a prospective longitudinal questionnaire study, with a qualitative sub-component, in two cohorts of patients, purposively sampled across two major cancer centres in Yorkshire and London. Our design will draw upon knowledge and methods in clinical epidemiology, sociology, psychosocial oncology, and developmental psychology. Cohort 1 will include newly diagnosed patients within 3 months of diagnosis, and Cohort 2 will include survivors 3-5 years post-diagnosis. They will both be evaluated at consent and 6 months later. Studies 1 and 2 will define the core socio-demographic and clinical factors associated with social reintegration outcomes. Meanwhile, Study 3 will enable us to: (a) estimate the impact of patient-reported outcomes and psychosocial factors on social reintegration outcomes; (b) facilitate an efficient consideration of immediate (first year post-diagnosis) and late (up to 5 years post-diagnosis) effects of cancer on social reintegration; (c) create a comprehensive cohort of TYAs aged 16-39 through the merging of this database with BRIGHTLIGHT. The qualitative element will elicit patients' views of their disrupted biographies, helping us explore additional factors perceived to influence their social reintegration. Objective 4. Determine how the results of our studies, integrated within the Multidimensional Stratification Model of Social Reintegration Outcomes, should be implemented within current NHS practice to reduce inequalities of opportunities following a cancer diagnosis. This objective is tightly linked to our impact plan, driven by the principle of co-production. Through meetings and workshops with patients, charities, and professionals we will optimise the pragmatic implementation of our findings in current clinical and psychological NHS practice.

Lay 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.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: CANCER AND NEOPLASMS