A cross sectional analysis from a single institution’s experience of psychosocial distress and health-related quality of life in the primary brain tumor population

Abstract

Primary brain tumor patients experience high levels of distress. The purpose of this cross-sectional, retrospective study is to evaluate the level and different sources of psychosocial distress and how these pertain to health-related quality of life (HRQoL). The Primary and Recurrent Glioma registry at Duke's The Preston Robert Tisch Brain Tumor Center was queried retrospectively for demographic and clinical information on patients seen between December 2013 and February 2014. Data also included the National Comprehensive Cancer Network's Distress Thermometer (NCCN-DT), Functional Assessment of Cancer Therapy-Brain Cancer (FACT-Br), and Functional Assessment of Chronic Illness Therapy- Fatigue (FACIT-F). 829 subjects completed questionnaires. 54% were male; 96% completed the NCCN-DT; 33.3% had a DT score ≥4 (moderate/severe distress). Women reported DT ≥ 4 more often than men (38.6 vs 29.0%; p = 0.005). Patients within 1 year of diagnosis reported DT ≥ 4 more often than those 1+ years after diagnosis (38.8 vs 30.9%; p = 0.034). 73.0% reported physical problems; the most frequent being fatigue (43.2%) and memory/concentration (40.9%). 42.0% complained of emotional problems with worry (29.4%) and nervousness (22.4%) being the most common. Patients who reported at least one practical, family, emotional or physical problem had significantly lower HRQoL scores (p < 0.001). Primary brain tumor patients experience memory dysfunction, fatigue, nervousness, worry, and financial concerns, which have a negative effect on the patient's HRQoL. By identifying and addressing these stressors, it may be possible to improve patient HRQoL.

Impact of distress screening algorithm for psycho-oncological needs in neurosurgical patients

“…In this small patient collection with the cut-off DT ≥ 5, 74.4% patients demonstrated suspicious striking results [ 1 ]. Our larger study demonstrated comparable high positive rates, in line also with reports by other authors [ 5 , 15 , 16 ]. Due to the ongoing discussion about the “correct” cut-off value in DT in brain tumor patients with values ranges from ≥4 to ≥6 [ 4 ], we assessed sensitivity and specificity with DT ≥5 and DT≥6.…”

“…Patients experience sadness; they feel ashamed of their diagnosis, appearance, or resulting deficits and withdraw more and more from social life. Up to 74% of patients report increased distress [ 1 ] with physical and emotional issues [ 2 , 3 ], resulting in reduced quality of life [ 4 , 5 ]. Up to 15-38% of the patients develop depressive symptoms [ 6 , 7 ].…”

“…Brain cancer patients are heavily burdened, more than most other tumor patients [ 8 , 9 ]. Various studies document that increased distress is not only present preoperatively but along the course of the disease [ 2 , 3 , 5 ], underlining the clinical impact of increased psychooncological distress in neurosurgical patients [ 10 , 11 , 12 ] as well as illustrating a clear correlation between elevated distress and patient compliance during further therapy [ 10 , 13 ].…”

Translation and Linguistic Validation of the Simplified Chinese Brain Cancer Patient-Reported Outcomes Evaluation System

“…Health-related quality of life (HRQOL) is a medical concept developed in recent years that means an individual's or a group's perceived physical and mental health over time [4][5][6]. Recently, numerous researches have reported that the patients' HRQoL significantly decreased because of brain cancer [7,8]. The main reason is that different from other cancers, brain cancer can cause personality changes and cognitive decline because of its position [9][10][11].…”

Symptom-based interventions to promote quality survivorship

“…Common symptoms, regardless of tumor type, size, and location, include fatigue, memory impairment, distress, and sleep disturbance. [1][2][3] These symptoms not only occur concurrently, but are also known to adversely affect quality of life. The interrelated nature of symptoms suggests that addressing one symptom may contribute to improvement in other areas, making an argument for targeted symptom management.…”