Health-Related Quality of Life in an Inception Cohort of Children With Juvenile Idiopathic Arthritis: A Longitudinal Analysis.
To describe changes in health-related quality of life (HRQoL) over time in children with juvenile idiopathic arthritis (JIA), relative to other outcomes, and to identify predictors of unfavorable HRQoL trajectories.



Children with JIA in the Research in Arthritis in Canadian Children emphasizing Outcomes (ReACCh-Out) cohort were included. The Juvenile Arthritis Quality of Life Questionnaire (JAQQ, a standardized instrument), health-related Quality of My Life (HRQoML, an instrument based on personal valuations), and JIA core variables were completed serially. Analyses included median values, Kaplan-Meier survival curves, and latent trajectory analysis.



A total of 1,249 patients enrolled at a median of 0.5 months after diagnosis were followed for a median of 34.2 months. The degree of initial HRQoL impairment and probabilities of reaching the best possible HRQoL scores varied across JIA categories (best for oligoarthritis, worst for rheumatoid factor-positive polyarthritis). Median times to attain best possible HRQoL scores (JAQQ 59.3 months, HRQoML 34.5 months), lagged behind those for disease activity, pain, and disability measures. Most patients followed trajectories with minimal or mild impairment; however, 7.6% and 13.8% of patients, respectively, followed JAQQ and HRQoML trajectories with persistent major impairment in HRQoL. JIA category, aboriginal ethnicity, and baseline disease activity measures distinguished between membership in trajectories with major and minimal impairments.



Improvement in HRQoL is slower than for disease activity, pain, and disability. Improvement of a measure based on respondents' preferences (HRQoML) is more rapid than that of a standardized measure (JAQQ). Higher disease activity at diagnosis heralds an unfavorable HRQoL trajectory.
University of Manitoba, Winnipeg, Manitoba, Canada.
Kiem
K
Oen
British Columbia's Children's Hospital and University of British Columbia, Vancouver, British Columbia, Canada.
Jaime
J
Guzman
University of Manitoba, Winnipeg, Manitoba, Canada.
Brenden
B
Dufault
British Columbia's Children's Hospital and University of British Columbia, Vancouver, British Columbia, Canada.
Lori B
LB
Tucker
University of Florida, Gainesville, Florida, and University of Saskatchewan, Saskatoon, Saskatchewan, Canada.
Natalie J
NJ
Shiff
Children's Hospital of Eastern Ontario and University of Ottawa, Ottawa, Ontario, Canada.
Karen Watanabe
KW
Duffy
University of Ottawa, Ottawa, Ontario, Canada.
Jennifer J Y
JJY
Lee
Hospital for Sick Children and University of Toronto, Toronto, Ontario, Canada.
Brian M
BM
Feldman
Children's Hospital, London Health Sciences Centre, and Western University, London, Ontario, Canada.
Roberta A
RA
Berard
Memorial University, St. John's, Newfoundland and Labrador, Canada.
Paul
P
Dancey
IWK Health Centre and Dalhousie University, Halifax, Nova Scotia, Canada.
Adam M
AM
Huber
McGill University, Montreal, Quebec, Canada.
Rosie
R
Scuccimarri
British Columbia's Children's Hospital and University of British Columbia, Vancouver, British Columbia, Canada.
David A
DA
Cabral
British Columbia's Children's Hospital and University of British Columbia, Vancouver, British Columbia, Canada.
Kimberly A
KA
Morishita
IWK Health Centre and Dalhousie University, Halifax, Nova Scotia, Canada.
Suzanne E
SE
Ramsey
University of Saskatchewan, Saskatoon, Saskatchewan, Canada.
Alan M
AM
Rosenberg
Université de Sherbrooke, Sherbrooke, Quebec, Canada.
Gilles
G
Boire
Alberta Children's Hospital and University of Calgary, Calgary, Alberta, Canada.
Susanne M
SM
Benseler
IWK Health Centre and Dalhousie University, Halifax, Nova Scotia, Canada.
Bianca
B
Lang
British Columbia's Children's Hospital and University of British Columbia, Vancouver, British Columbia, Canada.
Kristin
K
Houghton
Alberta Children's Hospital and University of Calgary, Calgary, Alberta, Canada.
Paivi M
PM
Miettunen
McGill University, Montreal, Quebec, Canada.
Gaëlle
G
Chédeville
Hospital for Sick Children and University of Toronto, Toronto, Ontario, Canada.
Deborah M
DM
Levy
Université de Sherbrooke, Sherbrooke, Quebec, Canada.
Alessandra
A
Bruns
Alberta Children's Hospital and University of Calgary, Calgary, Alberta, Canada.
Heinrike
H
Schmeling
CHU Ste. Justine and Université de Montréal, Montreal, Quebec, Canada.
Elie
E
Haddad
Hospital for Sick Children and University of Toronto, Toronto, Ontario, Canada.
Rae S M
RSM
Yeung
Children's Hospital of Eastern Ontario and University of Ottawa, Ottawa, Ontario, Canada.
Ciarán M
CM
Duffy
D000293:Adolescent; D000294:Adolescent Behavior; D041923:Adolescent Development; D000367:Age Factors; D001171:Arthritis, Juvenile / Q000175:diagnosis* / Q000503:physiopathology / Q000523:psychology* / Q000628:therapy; D002170:Canada; D002648:Child; D002652:Child Behavior; D002657:Child Development; D002675:Child, Preschool; D004185:Disability Evaluation; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D010147:Pain Measurement; D011237:Predictive Value of Tests; D011379:Prognosis; D011788:Quality of Life; D011795:Surveys and Questionnaires; D013997:Time Factors