The Experience of Interval Scans for Adults living with Primary Malignant Brain Tumours

Introduction: People living with primary malignant brain tumours (PMBT) face a complex and unpredictable illness. Throughout the disease course they undergo various treatments and follow-up with regular interval scans. There are potential burdens and benefits to interval scans, however there is no high-quality evidence to suggest interval scans are beneficial or whether scans alter outcomes of importance for people living with PMBTs. Yet, interval scanning may exacerbate issues such as uncertainty and anxiety, which impacts on patient quality of life. The aim of this study was to gain an in-depth understanding of how adults living with PMBTs experience and cope with interval scans.
Method: Twelve patients with a diagnosis of high-grade PMBT (glioblastoma n=10; ependymoma grade 3 n=1; solitary fibrous tumour of the dura grade 3 n=1) under the neuro-oncology teams at Leeds Teaching Hospital NHS Trust and King's College Hospital NHS Foundation Trust took part in the study. They were interviewed remotely about their experiences of interval scans, following a semi-structured interview guide. A constructionist grounded theory approach was used to analyse data.
Results: Six core categories and twenty subcategories were generated from the data. Core categories were: ‘Living with a PMBT: surviving’, ‘The interval scan process: varying levels of anxiety’, ‘The MRI scan: managing anxieties and accepting the discomfort’, ‘Waiting for the results: getting through the difficult times’, ‘The results: short-term relief vs ongoing anxiety’ and ‘Interval scans: provide a safety net’. Although most participants found interval scans uncomfortable, they accepted that they were something that they had to do and were using various methods to cope throughout the process. All participants said that the wait between their MRI scan and results was the most difficult time. Despite the difficulties they experienced, all participants said that they would prefer to have interval scans than wait for a change in their symptoms. Interval scans provided a ‘safety net’ for participants, by reducing uncertainty, giving them some sense of control, and a connection to their medical team.
Discussion: The present study shows that interval scanning is important and valued by some patients living with PMBT. Although interval scans can be distressing, they may help some people living with PMBT cope with the uncertainty of their diagnosis.