A new population-based study led by our PhD student, Glasgow-based neurologist Emanuela Molinari has found that people who survive cancer diagnosed before the age of 40 face a sustained higher risk of mental health problems for many years after treatment.
Published in Psycho-Oncology, the study used linked NHS records from the Lothian region of Scotland to follow 8,862 people who had survived at least five years after a cancer diagnosis, each matched to three people of the same age, sex and area-level deprivation with no history of cancer. By bringing together the cancer registry, hospital admissions, general practice records and community prescribing through the secure DataLoch Trusted Research Environment, the team was able to look beyond hospital admissions alone and capture mental health events recorded right across routine care.
Over a follow-up of more than a decade, 33.7% of survivors had a first recorded mental health event, compared with 25.5% of the matched group. The excess was present from the first year of survivorship and grew steadily over time, persisting beyond fifteen years. Around 90% of these first events were found in general practice or prescribing records, and fewer than one in ten in hospital admissions.
The most telling result came from a check the team ran on their own data. When they restricted the analysis to hospital records alone, the finding reversed: survivors then appeared to be at lower risk than their matched peers. The same people over the same period produced opposite conclusions depending only on which records were counted. Because hospital admissions capture just the small, severe end of mental health need, a study built on hospital admissions therefore captures only the small, severe fraction of cases. This helps explain why an earlier Scottish study using hospital data alone found no excess risk, and shows that the apparent absence of a problem was an artefact of where it looked rather than a true reassurance.
These findings suggest that research relying on hospital data underestimates the mental health burden carried by survivors of childhood, adolescent and young adult cancer, and they point to the central role of primary care in recognising and supporting it. Emanuela’s work shows how linked routine data can give a fuller and more honest picture of survivorship, and it sets the groundwork for a surveillance system to monitor these outcomes and test ways of reducing them.
The study concludes that mental health should be a core component of long-term survivorship care, with future work needed to evaluate targeted and cost-effective approaches to screening and support.
Read the full open-access paper: Mental Health Outcomes Among Long-Term Survivors of Childhood, Adolescent and Young Adult Cancer: A Scottish Population-Based Cohort Study