22 Quality of life and services use in patients diagnosed with brain tumours: data from a national cancer survivorship study

Abstract

Abstract Introduction About 13,000 new patients are diagnosed annually with a primary brain tumour in the UK and less than 20% of patients survive 10 years post-diagnosis. Patient-Reported Outcomes and Experiences (PROMs & PREMs) are largely used in clinical trials that recruit fitter and younger patients than patients routinely treated. Indigo is a randomised controlled digital clinical trial aimed at capturing adult cancer patients’ PROMs and PREMs. Methods We have implemented an online, patient-completed, randomised observational trial. We identified all patients who self-reported having a brain tumour and assessed their EQ-5D-5L scores, demographics and socio-economics metrics, and their use of health services. Results Between January 2025 and 1st of February 2026, 67,860 patients provided informed consent and enrolled in the trial, of whom 188 patients (0.3%) had a brain tumour and were eligible for analysis. The median age was 55 years old, 95% were white; 93%, heterosexual and 51%, women. 59% were diagnosed over 5 years ago and the oldest year of diagnosis was late 1980s. 47% patients received surgery, chemoradiotherapy; 45% reported that their tumour was still present and 44% that their tumour was cured. Most patients reported problems with anxiety and depression (62%) and performing their usual activities (61%). Over 60% saw either their GP (69%) or their hospital doctor (62%) and 55% would contact their CNS if they had a concern about their diagnosis. Conclusion This is the first national study to look at quality of life and service use in brain tumour patients. Patients report issues with mental health and activities of daily living, and patients diagnosed over 5 years ago still have annual appointments. We are continuing to recruit to the trial.