Developing a screening tool for the cognitive deficits experienced by patients with high-grade glioma after the completion of radiotherapy.

Gliomas are associated with an array of debilitating symptoms. Whilst overall prognosis can vary, it is generally poor for those diagnosed with a high-grade glioma (HGG). Treatment is available to extend survival and manage symptoms, however, median survival is just 15 months. As curative treatment is not available, quality of life (QoL) is a key priority for patients. Cognitive decline is a common symptom and is recognised as a potential side effect of radiotherapy. The term cognition describes the mental processes involved in how we perceive, understand, and formulate responses to stimuli. Therefore, impairment to this could impact how patients conduct themselves on a daily basis and impede QoL. Although the National Institute for Health and Care Excellence (NICE) state that patients with deficits may benefit from specialist cognitive support, such as neurorehabilitation, there is currently no standardised referral criteria for patients to access this. As most patients are followed up outside of a specialist setting, this PhD worked towards developing a simple screening tool, that is applicable in a primary care setting, to identify patients who may benefit from cognitive specialist assessment and support. Four study stages were conducted. Firstly, a systematic review was undertaken to determine which cognitive deficits have been reported in patients with brain tumours after radiotherapy. This informed a public survey, to explore which deficits highlighted in the review were relevant for patients with HGG. Following this, a focus group aimed to better understand how patients and their families describe cognitive deficits and their impact of QoL. Using this cumulative data, two easily administered screening tools consisting of four questions were drafted for patients and their families, to screen for cognitive deficits which might benefit from cognitive support. The final stage was the face validation of these proposed questions. This was done using cognitive interviews, to ensure questions were easy to understand, relevant and suitable to potential users. This research provides a new insight into the nature of cognitive decline in patients with HGG. The screening tool presented is the first to be designed for ease of administration in non-specialist settings while prioritising the subjective experiences of patients