To develop a disease specific measure of quality of life for application in children with juvenile rheumatoid arthritis and juvenile spondyloarthritides-the Juvenile Arthritis Quality of Life Questionnaire (JAQQ).
Patients and their parents were interviewed by a trained interviewer using a questionnaire focusing on physical function, psychosocial function, and general symptoms to determine the most appropriate items to include in the JAQQ. Respondents volunteered items and scored them for frequency of occurrence and importance. Items so generated were scored by a panel of experts for potential responsiveness and categorized into dimensions. Item number was reduced using this scoring system. The product was then pretested to confirm its construct validity and responsiveness. Thereafter, it was distributed to clinical experts to establish face and content validity.
91 patients, mean age 10.35 years (range 1.25-18.0), mean disease duration 3.99 years, and their parents were included in the interview process. 220 items generated were ultimately reduced to 85. Pretesting this version of the instrument in a further 30 patients showed it to have construct validity and responsiveness and led to a further reduction in items to 74, distributed in 4 dimensions: gross motor function (17 items), fine motor function (16 items), psychosocial function (22 items), and general symptoms (19 items). Face and content validity were established in 20 clinicians. Scaling was by 7 point Likert scale to enhance responsiveness. English and French versions were developed.
The JAQQ measures physical and psychosocial function and an array of general symptoms. Preliminary data suggest it is valid and responsive and thus might have potential in clinical trials.