Frontiers in Neurology (Mar 2019)

Health Related Quality of Life in Adult Low and High-Grade Glioma Patients Using the National Institutes of Health Patient Reported Outcomes Measurement Information System (PROMIS) and Neuro-QOL Assessments

  • Nicolette Gabel,
  • David B. Altshuler,
  • Amanda Brezzell,
  • Emily M. Briceño,
  • Nicholas R. Boileau,
  • Zachary Miklja,
  • Karen Kluin,
  • Karen Kluin,
  • Thomas Ferguson,
  • Kaitlin McMurray,
  • Lin Wang,
  • Sean R. Smith,
  • Noelle E. Carlozzi,
  • Shawn L. Hervey-Jumper

DOI
https://doi.org/10.3389/fneur.2019.00212
Journal volume & issue
Vol. 10

Abstract

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Health related quality of life (HRQOL) measures have become increasingly important in the management of glioma patients in both research and clinical practice settings. Functional impairment is common in low-grade and high-grade glioma patients as the disease has both oncological and neurological manifestations. Natural disease history as well as medical or surgical treatment can negatively influence HRQOL. There are no universal standards for HRQOL assessment in glioma patients. In this study, we examine patient perspectives on functional outcome domains and report the prevalence of impairments rates using the National Institutes of Health (NIH) Patient Reported Outcomes Measurement Information System (PROMIS) and Neuro-QOL item banks as measures of HRQOL. Retrospective analysis of a prospectively collected dataset involving 79 glioma patients reveals that quality of life concerns are the most important consideration behind making decisions about treatment in 80.7% of patients. The prevalence of functional impairment by PROMIS and NEURO-QOL assessment is high, ranging from 28.6% in the physical function domain to 43.9% in the cognitive function domain. Pain and anxiety related to physical decline is higher in LGG patients compared to HGG patients. Aphasia severity also impacts HRQOL. The results of this study suggest that the PROMIS and NEURO-QOL assessments may be important HRQOL metrics for future use in larger clinical research and clinical trial settings.

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