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Health‐Related Quality of Life in an Inception Cohort of Children With Juvenile Idiopathic Arthritis: A Longitudinal Analysis
Author(s) -
Oen Kiem,
Guzman Jaime,
Dufault Brenden,
Tucker Lori B.,
Shiff Natalie J.,
Duffy Karen Watanabe,
Lee Jennifer J. Y.,
Feldman Brian M.,
Berard Roberta A.,
Dancey Paul,
Huber Adam M.,
Scuccimarri Rosie,
Cabral David A.,
Morishita Kimberly A.,
Ramsey Suzanne E.,
Rosenberg Alan M.,
Boire Gilles,
Benseler Susanne M.,
Lang Bianca,
Houghton Kristin,
Miettunen Paivi M.,
Chédeville Gaëlle,
Levy Deborah M.,
Bruns Alessandra,
Schmeling Heinrike,
Haddad Elie,
Yeung Rae S. M.,
Duffy Ciarán M.
Publication year - 2018
Publication title -
arthritis care and research
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 2.032
H-Index - 163
eISSN - 2151-4658
pISSN - 2151-464X
DOI - 10.1002/acr.23236
Subject(s) - medicine , quality of life (healthcare) , polyarthritis , arthritis , cohort , juvenile rheumatoid arthritis , oligoarthritis , physical therapy , disease , pediatrics , nursing
Objective To describe changes in health‐related quality of life ( HRQ oL) over time in children with juvenile idiopathic arthritis ( JIA ), relative to other outcomes, and to identify predictors of unfavorable HRQ oL trajectories. Methods Children with JIA in the Research in Arthritis in Canadian Children emphasizing Outcomes (Re ACC h‐Out) cohort were included. The Juvenile Arthritis Quality of Life Questionnaire ( JAQQ , a standardized instrument), health‐related Quality of My Life ( HRQ o ML , 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. Results 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 HRQ oL impairment and probabilities of reaching the best possible HRQ oL scores varied across JIA categories (best for oligoarthritis, worst for rheumatoid factor–positive polyarthritis). Median times to attain best possible HRQ oL scores ( JAQQ 59.3 months, HRQ o ML 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 HRQ o ML trajectories with persistent major impairment in HRQ oL. JIA category, aboriginal ethnicity, and baseline disease activity measures distinguished between membership in trajectories with major and minimal impairments. Conclusion Improvement in HRQ oL is slower than for disease activity, pain, and disability. Improvement of a measure based on respondents’ preferences ( HRQ o ML ) is more rapid than that of a standardized measure ( JAQQ ). Higher disease activity at diagnosis heralds an unfavorable HRQ oL trajectory.