title: Do neurooncological patients and their significant others agree on quality of life ratings?
abstract: BACKGROUND
  Patients suffering from brain tumours often experience a wide range of cognitive impairments that impair their ability to report on their quality of life and symptom burden. The use of proxy ratings by significant others may be a promising alternative to gain information for medical decision making or research purposes, if self-ratings are not obtainable. Our study investigated the agreement of quality of life and symptom ratings by the patient him/herself or by a significant other.
  
  
  METHODS
  Patients with primary brain tumours were recruited at the neurooncological outpatient unit of Innsbruck Medical University. Quality of life self- and proxy-ratings were collected using the EORTC QLQ-C30 and its brain cancer module, the QLQ-BN20.
  
  
  RESULTS
  Between May 2005 and August 2007, 42 pairs consisting of a patient and his/her significant other were included in the study. Most of the employed quality of life scales showed fairly good agreement between patient- and proxy-ratings (median correlation 0.46). This was especially true for Physical Functioning, Sleeping Disturbances, Appetite Loss, Constipation, Taste Alterations, Visual Disorders, Motor Dysfunction, Communication Deficits, Hair Loss, Itchy Skin, Motor Dysfunction and Hair Loss. Worse rater agreement was found for Social Functioning, Emotional Functioning, Cognitive Functioning, Fatigue, Pain, Dyspnoea and Seizures.
  
  
  CONCLUSIONS
  The assessment of quality of life in brain cancer patients through ratings from their significant others seems to be a feasible strategy to gain information about certain aspects of patient's quality of life and symptom burden, if the patient is not able to provide information himself.
authors.affiliation: Department of Psychiatry and Psychotherapy, Innsbruck Medical University, Anichstr,35, A-6020 Innsbruck, Austria. johannes.giesinger@i-med.ac.at
authors.forename: Johannes M
authors.initials: JM
authors.lastname: Giesinger
authors.forename: Miriam
authors.initials: M
authors.lastname: Golser
authors.forename: Astrid
authors.initials: A
authors.lastname: Erharter
authors.forename: Georg
authors.initials: G
authors.lastname: Kemmler
authors.forename: Gabriele
authors.initials: G
authors.lastname: Schauer-Maurer
authors.forename: Guenter
authors.initials: G
authors.lastname: Stockhammer
authors.forename: Armin
authors.initials: A
authors.lastname: Muigg
authors.forename: Markus
authors.initials: M
authors.lastname: Hutterer
authors.forename: Gerhard
authors.initials: G
authors.lastname: Rumpold
authors.forename: Bernhard
authors.initials: B
authors.lastname: Holzner
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001932:Brain Neoplasms / Q000150:complications / Q000503:physiopathology / Q000523:psychology; D017281:Cost of Illness; D003627:Data Interpretation, Statistical; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D017063:Outcome Assessment, Health Care; D019727:Proxy; D011788:Quality of Life; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires