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
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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.
KeywordsBrain Cancer Psychosocial Distress HRQoL
The authors would like to thank the patients for their participation in this study and the staff at the PRTBTC, as well as Jennifer Jackman, Ph.D. and Wendy R. Gentry for their contributions in the editing of this paper.
This work was supported by Duke University Health System, The Preston Robert Tisch Brain Tumor Center eIRB Pro00053653.
Compliance with ethical standards
Conflict of interest
Annick Desjardins participates as advisory board member for Genentech/Roche, Cavion, Novartis, EMD Serono and PTC Therapeutics. Annick Desjardins holds stock/ownership interest with IST GmbH. Annick Desjardins holds letters of patent for Oncolytic Polio virus human tumors. All other authors reported no conflicts of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed consent was obtained from all individual participants included in the study.
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