Domains of health-related quality of life important to patients with giant cell arteritis.
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.
Hellmann
David B
DB
Johns Hopkins University School of Medicine, Hopkins Bayview Medical Center, 4940 Eastern Avenue, Baltimore, MD 21224, USA. hellmann@jhmi.edu
Uhlfelder
Misty L
ML
Stone
John H
JH
Jenckes
Mollie W
MW
Cid
Maria C
MC
Guillevin
Loic
L
Moreland
Larry
L
Dellaripa
Paul F
PF
Hoffman
Gary S
GS
Merkel
Peter A
PA
Spiera
Robert
R
Brown
Lin
L
Hernández-Rodríguez
José
J
Rubin
Haya R
HR
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