Introduction High-grade glioma (HGG) and subsequent treatments are accompanied by an array of symptoms which can have a detrimental effect on patient quality of life (QoL). Cognitive changes are especially difficult to understand as they are more challenging to quantify and describe.
Aims To identify areas of cognition affected in patients with HGG after radiotherapy and explore the ways patients and their families describe changes.
Method A mixed-method, online public survey asked patients, their families, and healthcare professionals (HCP) how often they experienced/observed difficulty with daily mental tasks after receiving radiotherapy. Likert scales were coded either 1 (Patients/family ‘much less often’; HCPs: ‘never’) to 5 (patients/family: ‘much more often’; HCPs: ‘very frequently’). Responses were descriptively analysed and optional free text questions were thematically analysed.
Results Between 15/09/20 and 24/11/20, 143 participants completed the survey (patients n=91; family n=46; HCPs n=6). The mean responses for patients and family were consistently > 3 (range 3.4 to 4.3) and for HCPs consistently > 2 (range: 2.40 to 4) Free text responses show that patients and family acknowledge a strain on daily living, with themes including reliance on others and a decline in emotional wellbeing. Distinctions between responses show family members focus more on patient personality changes and how patient-family interactions are negatively affected. Patients describe changes first-hand, emphasising coping mechanisms.
Conclusion Decline may be experienced across all cognitive domains, negatively impacting both patients and those around them. Whilst both patients and family members express this both perspectives should be accounted for when assessing a patients’ cognitive state as both give unique insights.
Impact This highlights the need for patients to be able to access support or neurorehabilitation. These results directly guided the development of a potential screening tool for the cognitive deficits experienced by patients.
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