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Social Outcomes after Adolescent and Young Adult Cancer

A programme of research into social outcomes after AYA cancer and its treatment
17 Oct 2019
Cancer in Special Situations / Population

A growing proportion of the population living with and beyond cancer are working-age cancer survivors.

Just in the UK, 300,000 are estimated to be Adolescents and Young Adults (AYAs) aged 16 to 39. With advances in cancer treatment, almost 85% of AYAs 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).

This newly funded project aims to understand how the social integration of AYAs is impacted by a cancer diagnosis.

The project researchers will describe their social reintegration (SR) after a cancer diagnosis 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). They will explain which factors contribute (together or independently) to enable or disable AYAs' 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. The research programme 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 AYAs' lives.

Through 3 interconnected strands of research, including a qualitative sub-study the project will explore, in turn, several sets of factors that may influence AYAs' 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 embedded qualitative patient interviews. This will enable the development of stratified, evidence-based knowledge to improve the educational, employment, and social development opportunities of AYA cancer patients.

To evaluate the influence of socio-demographic and clinical factors 2 existing databases will be compared and analyse, including information on social outcomes in the general population of AYA and a nation-wide AYA cancer group.

Then a longitudinal study with 2 patient groups (one during and one after treatment) across 2 European centres will evaluate the influence of psychosocial factors and patient-reported outcomes. Interviews with AYAs in the socio-demographic and clinical strata defined by the secondary data analyses will add wider potential factors.

AYAs living with and after cancer tell us they 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. The support to achieve requires clear research evidence, which this project will deliver. Within 3 years, the 3 strands of the 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 AYAs. This will be summarised in a Multidimensional Stratification Model of Social Reintegration Outcomes, which will be relevant to many health and social care policies addressing patients' future socio-economic outcomes.

The grant is worth just over £1,000,000 and the project participants are immensely grateful to have been funded by the UK Economic and Social Research Council.

The programme is for 3 years from September 2019

Those involved are:

Last update: 17 Oct 2019

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