Abstract

INTRODUCTION: Patients with PBTs face uncertainty related to the treatment outcomes and symptoms. Completing treatment can be stressful to the patients. Our previous study found patients' level of uncertainty during treatment was as high as in newly-diagnosed period and was significantly correlated to negative mood states and symptom severity. This study examined the changes of uncertainty and mood by surveying patients twice in a Brain/Spine clinic. METHODS: 57 patients completed the questionnaires two times; either twice during surveillance appointments or one time during treatment period and the other during follow-up without active treatment. Instruments included a clinical checklist, a demographic data sheet, the Mishel Uncertainty in Illness Scale-Brain Tumor Form (MUIS-BT), and the Profile of Mood States-Short Form (POMS-SF). The paired t-test was used to compare the differences between baseline survey and follow-up survey on uncertainty and mood. RESULTS: Subjects were primarily white(82.5%) males(52.6%) with a mean age of 44.7 ± 12.3 years at the time of the second data collection. For patients whose treatment status changed from ‘on treatment’ to ‘follow-up’(n = 25), their uncertainty was not significantly different in terms of ambiguity/inconsistency of illness-related events; unpredictability of disease prognosis; unpredictability of symptoms; and complexity of the disease process between during treatment and surveillance. However, patients felt significantly less vigorous during the surveillance period(p < .05). Patients ‘not on treatment’ at baseline(n = 32) felt significantly more uncertain about unpredictability of disease prognosis(p < .05) at the second time being surveyed. CONCLUSIONS: The illness trajectory of patients with PBTs is associated with high incidence of uncertainty. Overall uncertainty and mood disturbance such as anxiety and depression remained constant when patients were under only surveillance. Patients may be relieved to finish treatment, but find it difficult not to worry about the disease prognosis and the possibility of recurrence. Patients need psychological support continuously even in the setting of stable disease.

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