title: Domains of health-related quality of life important to patients with giant cell arteritis.
abstract: OBJECTIVE
  To determine aspects of quality of life (QOL) important to people with giant cell arteritis (GCA).
  
  
  METHODS
  We explored the domains of QOL affected by GCA in audiotaped focus groups. We then created an Importance Rating Questionnaire (IRQ) by constructing questions related to the domains most frequently mentioned. Of 214 GCA patients to whom the IRQ was sent, 145 (68%) responded. We calculated frequencies of responses and then ranked items by the proportion selecting the top category of importance and also according to a mean item rank. We compared the domains of QOL covered by the IRQ with those in the Short Form 12 (SF-12).
  
  
  RESULTS
  The highest rated QOL item was "losing sight in both eyes permanently." Of the top 20 items, 12 were in domains not covered directly by the SF-12.
  
  
  CONCLUSIONS
  We have identified aspects of QOL important to GCA patients. Assessment of QOL in GCA should include vision and other domains that are not included in standard QOL questionnaires.
authors.affiliation: Johns Hopkins University School of Medicine, Hopkins Bayview Medical Center, 4940 Eastern Avenue, Baltimore, MD 21224, USA. hellmann@jhmi.edu
authors.forename: David B
authors.initials: DB
authors.lastname: Hellmann
authors.forename: Misty L
authors.initials: ML
authors.lastname: Uhlfelder
authors.forename: John H
authors.initials: JH
authors.lastname: Stone
authors.forename: Mollie W
authors.initials: MW
authors.lastname: Jenckes
authors.forename: Maria C
authors.initials: MC
authors.lastname: Cid
authors.forename: Loic
authors.initials: L
authors.lastname: Guillevin
authors.forename: Larry
authors.initials: L
authors.lastname: Moreland
authors.forename: Paul F
authors.initials: PF
authors.lastname: Dellaripa
authors.forename: Gary S
authors.initials: GS
authors.lastname: Hoffman
authors.forename: Peter A
authors.initials: PA
authors.lastname: Merkel
authors.forename: Robert
authors.initials: R
authors.lastname: Spiera
authors.forename: Lin
authors.initials: L
authors.lastname: Brown
authors.forename: José
authors.initials: J
authors.lastname: Hernández-Rodríguez
authors.forename: Haya R
authors.initials: HR
authors.lastname: Rubin
mesh_terms: D000203:Activities of Daily Living; D000368:Aged; D000369:Aged, 80 and over; D005260:Female; D013700:Giant Cell Arteritis / Q000150:complications / Q000503:physiopathology*; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D011795:Surveys and Questionnaires; D014786:Vision Disorders / Q000209:etiology