RT Journal Article
SR Electronic
T1 What Matters Most for Patients, Parents, and Clinicians in the Course of Juvenile Idiopathic Arthritis? A Qualitative Study
JF The Journal of Rheumatology
JO J Rheumatol
FD The Journal of Rheumatology
SP 2260
OP 2269
DO 10.3899/jrheum.131536
VO 41
IS 11
A1 Jaime Guzman
A1 Oralia Gómez-Ramírez
A1 Roman Jurencak
A1 Natalie J. Shiff
A1 Roberta A. Berard
A1 Ciaran M. Duffy
A1 Kiem Oen
A1 Ross E. Petty
A1 Susanne M. Benseler
A1 Rollin Brant
A1 Lori B. Tucker
YR 2014
UL http://www.jrheum.org/content/41/11/2260.abstract
AB Objective. To assess which clinical features are most important for patients, parents, and clinicians in the course of juvenile idiopathic arthritis (JIA). Methods. Forty-nine people participated in 6 audience-specific focus group discussions and 112 reciprocal interviews in 3 Canadian cities. Participants included youth with JIA, experienced English- and French-speaking parents, novice parents (< 6 mos since diagnosis), pediatric rheumatologists, and allied health professionals. Participants discussed the importance of 34 JIA clinical features extracted from medical literature. Transcripts and interview reports underwent qualitative analysis to establish relative priorities for each group. Results. Most study participants considered medication requirements, medication side effects, pain, participant-defined quality of life, and active joints as high priority clinical features of JIA. Active joint count was the only American College of Rheumatology core variable accorded high or medium priority by all groups. Rheumatologists and allied health professionals considered physician global assessment as high priority, but it had very low priority for patients and parents. The parent global assessment was considered high priority by clinicians, medium to high by parents, and low by patients. Child Health Assessment Questionnaire scores were considered low priority by patients and parents, and moderate or high by clinicians. The number of joints with limited motion was given low to very low priority by all groups. Parents gave high priority to arthritis flares. Conclusion. If our findings are confirmed, medication requirements, medication side effects, pain, participant-defined quality of life, and active joint counts should figure prominently in describing the course of JIA.