Critical Appraisal of Studies Measuring Quality of Life in Juvenile Idiopathic Arthritis

Abstract

Objective. 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). Methods. 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.Results. 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. Conclusion. 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.

A systematic review of quality of life research in medicine and health sciences

“…QOL research has been criticized for a lack of conceptual clarity and clear definition of QOL [8, 15–17]. In this snapshot review, most articles had a low-quality score according to the criteria of Gill and Feinstein [5, 8].…”

Validity and feasibility of the self-report EQ-5D-Y as a generic Health-Related Quality of Life outcome measure in children and adolescents with Juvenile Idiopathic Arthritis in Western Cape, South Africa

“…Delayed or inaccessible, partially effective or ineffective therapy may result in impairments of structures, physical and psychological functional limitations, all limiting daily activities, which, in turn, may affect the Health-Related Quality of Life (HRQoL) of the child (Adunuri & Feldman 2015). The concept of HRQoL may be defined as the patient’s self-reported perception of the multidimensional impact on their life, of the disease and its management.…”

“…The concept of HRQoL may be defined as the patient’s self-reported perception of the multidimensional impact on their life, of the disease and its management. The dimensions reported on, are generally grouped under physical daily activities, psychological well-being and social interaction (Adunuri & Feldman 2015; Varni et al 2002).…”