THE JUVENILE ARTHRITIS QUALITY-OF-LIFE QUESTIONNAIRE DEVELOPMENT OF ANEW RESPONSIVE INDEX FOR JUVENILE RHEUMATOID-ARTHRITIS AND JUVENILE SPONDYLOARTHRITIDES

Objective, To develop a disease specific measure of quality of life fo r application in children with juvenile rheumatoid arthritis and juven ile spondyloarthritides - the Juvenile Arthritis Quality of Life Quest ionnaire (JAQQ). Methods. Patients and their parents were interviewed by a trained interviewer using a questionnaire focusing on physical fu nction, psychosocial function, and general symptoms to determine the m ost appropriate items to include in the JAQQ. Respondents volunteered items and scored them for frequency of occurrence and importance. Item s so generated were scored by a panel of experts for potential respons iveness and categorized into dimensions. Item number was reduced using this scoring system. The product was then pretested to confirm its co nstruct validity and responsiveness. Thereafter, it was distributed to clinical experts to establish face and content validity. Results, 91 patients, mean age 10.35 years (range 1.25-18.0), mean disease duratio n 3.99 years, and their parents were included in the interview process . 220 items generated were ultimately reduced to 85. Pretesting this v ersion of the instrument in a further 30 patients showed it to have co nstruct validity and responsiveness and led to a further reduction in items to 74, distributed in 4 dimensions: gross motor function (17 ite ms), fine motor function (16 items), psychosocial function (22 items), and general symptoms (19 items). Face and content validity were estab lished in 20 clinicians. Scaling was by 7 point Likert scale to enhanc e responsiveness. English and French versions were developed. Conclusi on. The JAQQ measures physical and psychosocial function and an array of general symptoms. Preliminary data suggest it is valid and responsi ve and thus might have potential in clinical trials.