Glioma patients may experience behavioral and personality changes (BPC), which have a negative impact on the lives of both brain tumor patients and their relatives. The extent of BPC is currently unknown, and it is unclear if available assessment tools cover all aspects of BPC that are relevant for glioma patients. This study aimed to determine which characteristics of BPC are relevant for glioma patients.
Possible characteristics of BPC were identified in the literature and based on expert opinion. Next, these 49 items were presented to patients and caregivers/former caregivers in an online survey launched via the International Brain Tumour Alliance. Participants were requested to indicate the relevance for each characteristic on a 4-point Likert scale ranging from ‘not at all’ to ‘very much’. In addition, they had to indicate which three characteristics had most impact on their daily life, and if characteristics were missing.
Completed surveys were obtained from 141 respondents, of which 36% were patients, 50% caregivers and 14% unknown. Most patients had grade II or IV glioma (29% vs 38%). Of 49 characteristics, 35 were reported as relevant in at least 25% (range all characteristics: 7–44%). Patients (n=50) and caregivers (n=70) rated different characteristics as most important. Common characteristics were lack of motivation, change in being socially active, not able to finish things and change in level of irritation. There were no characteristics reported to be missing by ≥5 respondents.
The majority of characteristics were rated as relevant in >25% of respondents, and patients and caregivers differed in which were most relevant. A clear definition based on these results is therefore difficult to establish. A next step would be to perform a cluster analysis of patients and caregivers separately, and discuss the results with experts, to reach consensus on an appropriate definition.