title: Concordance of patient and caregiver reports in evaluating quality of life in patients with malignant gliomas and an assessment of caregiver burden.
abstract: BACKGROUND
  Given the neurocognitive impairment experienced by many patients with malignant gliomas, caregiver reports can be critical in assessing the quality of life (QOL) of these patients. In this study, we explored whether assessment of patient QOL by the primary caregiver shows concordance with the patient's self-reported QOL, and we quantified the burden faced by caregivers.
  
  
  METHODS
  QOL of 45 patients was evaluated by both the patient and primary caregiver on 3 or more separate occasions using the Functional Assessment of Cancer Therapy-Brain (FACT-Br) instrument, and concordance between the 2 reports was evaluated. Caregiver burden was measured using the Caregiver Quality of Life Index-Cancer (CQOL-C) instrument.
  
  
  RESULTS
  Overall, good concordance was observed between the patient and caregiver FACT-Br reports (intraclass correlation coefficient = 0.74). Patient-reported FACT-Br scores were 4.75 (95% CI, 1.44-8.05) points higher than paired caregiver reports on the 200-point scale (P= .008); however, this difference did not achieve clinical significance. Caregiver burden, as measured by the CQOL-C, was significantly greater among caregivers in this study than those previously reported for caregivers of patients with lung, breast, or prostate cancer (P< .001).
  
  
  CONCLUSIONS
  Despite minor discrepancies in caregiver assessments of patient QOL relative to patient self-reports, our results suggest that the caregiver assessments can serve as adequate proxies for patient reports. Our results also illustrate the particularly heavy burden faced by caregivers of patients with malignant glioma. Further research into both of these areas is warranted.
authors.affiliation: Department of Neurology, Northwestern University , Chicago, Illinois (D.I.J., P.K., B.V.S., S.A.G., L.R., J.J.R.); Department of Preventive Medicine Northwestern University , Chicago, Illinois (A.W.R., I.B.H.); Department of Neurosurgery Northwestern University , Chicago, Illinois (J.P.C., K.M.); Department of Radiation Oncology , Northwestern University , Chicago, Illinois (M.M.); Medical Social Sciences , Northwestern University , Chicago, Illinois (L.I.W.).
authors.forename: Daniel I
authors.initials: DI
authors.lastname: Jacobs
authors.affiliation: Department of Neurology, Northwestern University , Chicago, Illinois (D.I.J., P.K., B.V.S., S.A.G., L.R., J.J.R.); Department of Preventive Medicine Northwestern University , Chicago, Illinois (A.W.R., I.B.H.); Department of Neurosurgery Northwestern University , Chicago, Illinois (J.P.C., K.M.); Department of Radiation Oncology , Northwestern University , Chicago, Illinois (M.M.); Medical Social Sciences , Northwestern University , Chicago, Illinois (L.I.W.).
authors.forename: Priya
authors.initials: P
authors.lastname: Kumthekar
authors.affiliation: Department of Neurology, Northwestern University , Chicago, Illinois (D.I.J., P.K., B.V.S., S.A.G., L.R., J.J.R.); Department of Preventive Medicine Northwestern University , Chicago, Illinois (A.W.R., I.B.H.); Department of Neurosurgery Northwestern University , Chicago, Illinois (J.P.C., K.M.); Department of Radiation Oncology , Northwestern University , Chicago, Illinois (M.M.); Medical Social Sciences , Northwestern University , Chicago, Illinois (L.I.W.).
authors.forename: Becky V
authors.initials: BV
authors.lastname: Stell
authors.affiliation: Department of Neurology, Northwestern University , Chicago, Illinois (D.I.J., P.K., B.V.S., S.A.G., L.R., J.J.R.); Department of Preventive Medicine Northwestern University , Chicago, Illinois (A.W.R., I.B.H.); Department of Neurosurgery Northwestern University , Chicago, Illinois (J.P.C., K.M.); Department of Radiation Oncology , Northwestern University , Chicago, Illinois (M.M.); Medical Social Sciences , Northwestern University , Chicago, Illinois (L.I.W.).
authors.forename: Sean A
authors.initials: SA
authors.lastname: Grimm
authors.affiliation: Department of Neurology, Northwestern University , Chicago, Illinois (D.I.J., P.K., B.V.S., S.A.G., L.R., J.J.R.); Department of Preventive Medicine Northwestern University , Chicago, Illinois (A.W.R., I.B.H.); Department of Neurosurgery Northwestern University , Chicago, Illinois (J.P.C., K.M.); Department of Radiation Oncology , Northwestern University , Chicago, Illinois (M.M.); Medical Social Sciences , Northwestern University , Chicago, Illinois (L.I.W.).
authors.forename: Alfred W
authors.initials: AW
authors.lastname: Rademaker
authors.affiliation: Department of Neurology, Northwestern University , Chicago, Illinois (D.I.J., P.K., B.V.S., S.A.G., L.R., J.J.R.); Department of Preventive Medicine Northwestern University , Chicago, Illinois (A.W.R., I.B.H.); Department of Neurosurgery Northwestern University , Chicago, Illinois (J.P.C., K.M.); Department of Radiation Oncology , Northwestern University , Chicago, Illinois (M.M.); Medical Social Sciences , Northwestern University , Chicago, Illinois (L.I.W.).
authors.forename: Laurie
authors.initials: L
authors.lastname: Rice
authors.affiliation: Department of Neurology, Northwestern University , Chicago, Illinois (D.I.J., P.K., B.V.S., S.A.G., L.R., J.J.R.); Department of Preventive Medicine Northwestern University , Chicago, Illinois (A.W.R., I.B.H.); Department of Neurosurgery Northwestern University , Chicago, Illinois (J.P.C., K.M.); Department of Radiation Oncology , Northwestern University , Chicago, Illinois (M.M.); Medical Social Sciences , Northwestern University , Chicago, Illinois (L.I.W.).
authors.forename: James P
authors.initials: JP
authors.lastname: Chandler
authors.affiliation: Department of Neurology, Northwestern University , Chicago, Illinois (D.I.J., P.K., B.V.S., S.A.G., L.R., J.J.R.); Department of Preventive Medicine Northwestern University , Chicago, Illinois (A.W.R., I.B.H.); Department of Neurosurgery Northwestern University , Chicago, Illinois (J.P.C., K.M.); Department of Radiation Oncology , Northwestern University , Chicago, Illinois (M.M.); Medical Social Sciences , Northwestern University , Chicago, Illinois (L.I.W.).
authors.forename: Kenji
authors.initials: K
authors.lastname: Muro
authors.affiliation: Department of Neurology, Northwestern University , Chicago, Illinois (D.I.J., P.K., B.V.S., S.A.G., L.R., J.J.R.); Department of Preventive Medicine Northwestern University , Chicago, Illinois (A.W.R., I.B.H.); Department of Neurosurgery Northwestern University , Chicago, Illinois (J.P.C., K.M.); Department of Radiation Oncology , Northwestern University , Chicago, Illinois (M.M.); Medical Social Sciences , Northwestern University , Chicago, Illinois (L.I.W.).
authors.forename: MaryAnne
authors.initials: M
authors.lastname: Marymont
authors.affiliation: Department of Neurology, Northwestern University , Chicago, Illinois (D.I.J., P.K., B.V.S., S.A.G., L.R., J.J.R.); Department of Preventive Medicine Northwestern University , Chicago, Illinois (A.W.R., I.B.H.); Department of Neurosurgery Northwestern University , Chicago, Illinois (J.P.C., K.M.); Department of Radiation Oncology , Northwestern University , Chicago, Illinois (M.M.); Medical Social Sciences , Northwestern University , Chicago, Illinois (L.I.W.).
authors.forename: Irene B
authors.initials: IB
authors.lastname: Helenowski
authors.affiliation: Department of Neurology, Northwestern University , Chicago, Illinois (D.I.J., P.K., B.V.S., S.A.G., L.R., J.J.R.); Department of Preventive Medicine Northwestern University , Chicago, Illinois (A.W.R., I.B.H.); Department of Neurosurgery Northwestern University , Chicago, Illinois (J.P.C., K.M.); Department of Radiation Oncology , Northwestern University , Chicago, Illinois (M.M.); Medical Social Sciences , Northwestern University , Chicago, Illinois (L.I.W.).
authors.forename: Lynne I
authors.initials: LI
authors.lastname: Wagner
authors.affiliation: Department of Neurology, Northwestern University , Chicago, Illinois (D.I.J., P.K., B.V.S., S.A.G., L.R., J.J.R.); Department of Preventive Medicine Northwestern University , Chicago, Illinois (A.W.R., I.B.H.); Department of Neurosurgery Northwestern University , Chicago, Illinois (J.P.C., K.M.); Department of Radiation Oncology , Northwestern University , Chicago, Illinois (M.M.); Medical Social Sciences , Northwestern University , Chicago, Illinois (L.I.W.).
authors.forename: Jeffrey J
authors.initials: JJ
authors.lastname: Raizer
keywords: CQOL-C; FACT-Br; QOL; caregiver; glioma