Level of Distress Experienced by Glioblastoma Multiforme Patients and Caregivers in Relation to their Medical Education Background: A Qualitative Study

Abstract

BACKGROUND: Glioblastoma multiforme (GBM) is a primary brain tumor with extensive infiltration of surrounding brain tissue and a high rate of recurrence, with an average survival of 13–16 months. Due to the rapid course of the disease, multimodality treatment, and poor prognosis, both the patients and their caregivers will face significant psychological distress. Identification of the types and severity of distress is crucial to control morbidity during treatment. AIM: This study aims to define the level of distress experienced by patients and their caregivers during the treatment period by considering their medical education background. At the time of publication, this type of study is unique and has never been done before. MATERIALS AND METHODS: This study was conducted at the Neurosurgery Outpatient Department of Mochtar Riady Comprehensive Cancer Center Siloam Hospital Jakarta. Patients with GBM and their caregivers were recruited during the early stages of radiation treatment (T1) and the follow-up chemotherapy (T2) and were assessed using the distress thermometer (DT) and National Comprehensive Cancer Network (NCCN) problem checklist followed by in-depth interviews. Participants were divided into two groups based on medical education background. Significant distress is defined as DT score >4. RESULTS: Data from four pairs of patient-caregivers are collected during the early stages of T1. Two pairs of Patient-Caregivers without medical educational background (P-C non-D) are included later during T2. From T1, patients and caregivers with medical education (P-D) are higher than those without medical education (P-D > P-non D; C-D > C-non D). Another comparison shows that P-D is higher than C-D. In contrast, P-non D is lower than C-non D. Based on the time data collected, it shows DT: P-non D T2 > P-non D T1, but there is no difference between T2 and T1 in the caregiver’s group: C-non D T1 = C- non D T2. From the NCCN problem checklist, it is known that they attribute their distress mostly to physical problems. CONCLUSION: The physical and mental changes experienced by patients cause distress for patients and their caregivers. Knowledge of disease and treatment possessed by patients or caregivers helps them deal with GBM and the entire course of treatment.