Frequency, Clinical Correlates, and Ratings of Behavioral Changes in Primary Brain Tumor Patients: A Preliminary Investigation

Grahame K. Simpson, Eng-Siew Koh, Diane Whiting, Kylie M. Wright, Teresa Simpson, Rochelle Firth, Lauren Gillett, Kathryn Younan

Few studies have addressed the specific behavioral changes associated with primary brain tumor (PBT). This paper will report on the frequency and demographic/clinical correlates of such behaviors, and the reliability of rating such behaviors among people with PBT, family informants, and clinicians. The association of behavioral changes and patient functional status will also be discussed. A total of 57 patients with 37 family informants were recruited from two large Australian metropolitan hospitals. Each completed three neuro-behavioral self-report measures; the Emotional and Social Dysfunction Questionnaire, the Frontal Systems Behavior Scale, and the Overt Behavior Scale. Patients also completed a depression symptom measure. Functional status was defined by clinician-rated Karnofsky performance status. Patients were on average 52 years old, a median of 4 months (range 1-82) post-diagnosis, with high grade (39%), low grade (22%), or benign tumors (39%). Patients reported frequency rates of 7-40% across various behavioral domains including anger, inappropriate behavior, apathy, inertia, and executive impairment. The presence of epileptic seizures was associated with significantly higher levels of behavioral changes. Notably, behavior did not correlate with tumor grade or treatment modality. There was moderate agreement between patients and relatives on the presence or absence of behavioral changes, and substantial agreement between relative and clinician ratings. Depressed patients did not generally report more changes than non-depressed patients. Increases in the relative and clinician-rated behavior scores were significantly correlated with decreasing functional status in the patient. Behavioral changes were a common sequela of both benign and malignant PBT. Larger scale studies are required to confirm these results. The results suggest the importance of including behavior in brain cancer psychosocial assessments and the need to develop interventions to treat these patients and reduce the burden of care on families.