Screening for Psychological Distress in Adult Primary Brain Tumor Patients and Caregivers: Considerations for Cancer Care Coordination

Abstract

Introduction: This study aimed to assess psychological distress (PD) as scored by the Distress Thermometer (DT) in adult primary brain tumor patients and caregivers (CGs) in a clinic setting and ascertain if any high-risk subgroups for PD exist.

Material and methods: From May 2012 to August 2013, n = 96 patients and n = 32 CG underwent DT screening at diagnosis, and a differing cohort of n = 12 patients and n = 14 CGs at first recurrence. Groups were described by diagnosis (high grade, low grade, and benign) and English versus non English speaking. Those with DT score ≥4 met caseness criteria for referral to psycho-oncology services. One-way ANOVA tests were conducted to test for between-group differences where appropriate.

Results: At diagnosis and first recurrence, 37.5 and 75.0% (respectively) of patients had DT scores above the cutoff for distress. At diagnosis, 78.1% of CGs met caseness criteria for distress. All CGs at recurrence met distress criterion. Patients with high-grade glioma had significantly higher scores than those with a benign tumor. For patients at diagnosis, non English speaking participants did not report significantly higher DT scores than English speaking participants.

Discussion: Psychological distress is particularly elevated in CGs and in patients with high-grade glioma at diagnosis. Effective PD screening, triage, and referral by skilled care coordinators are vital to enable timely needs assessment, psychological support, and effective intervention.

Keywords: care coordination; neuro-oncology; primary brain tumor; psychological distress; screening.