To critically evaluate studies purporting to measure quality of life (QOL) or health-related QOL (HRQOL) in juvenile idiopathic arthritis (JIA) by assessing the face validity of studies via a predefined set of criteria based on Gill and Feinstein (1994).
Systematic review was conducted of studies in Medline, Embase, and PsycInfo purporting to measure QOL or HRQOL in JIA. Studies were evaluated based on a set of 8 yes/no criteria set forth by Gill and Feinstein in 1994.
Thirty-four of 50 studies (68%) purported to measure HRQOL, 13 of 50 (26%) measured QOL, and 3 of 50 (6%) measured both QOL and HRQOL. The descriptive analysis of studies is as follows: 22 of 50 studies (44%) explained and defined the authors' meaning of QOL or HRQOL, 42 of 50 studies (84%) stated and explained the domains of the instruments used to measure QOL and HRQOL, authors gave reasons for using a particular instrument in 25 of 50 studies (50%), 14 of 50 studies (28%) asked the patients to give their own global rating, 4 of 50 study authors (8%) tried to differentiate QOL from HRQOL, 5 of 50 authors (10%) provided an opportunity for patients to add items to an instrument, 30 of 50 study authors (60%) reported providing the patients with an opportunity to rate items of importance, and 18 of 50 studies (36%) reported an overall composite score for QOL or HRQOL.
Our results show that the face validity of studies measuring QOL in JIA is not up to the standards and recommendations set forth by Gill and Feinstein in 1994.