Paint me a picture: illustrating the psychosocial impact of different juvenile idiopathic arthritis categories
Timothy Cheng, Karen Hodge, Kristin Houghton, Lori Tucker, Sarah James, Heinrike Schmeling, Jeanine McColl, Marinka Twilt, Amieleena Chhabra, Dax G Rumsey, Christiaan Scott, Jaime Guzman, , Julie Barsalou, Daniah Basodan, Michelle Batthish, Roberta A Berard, Nicholas Blanchette, Gilles Boire, Roxana Bolaria, Alessandra Bruns, David A Cabral, Sarah Campillo, Tania Cellucci, Mercedes Chan, Gaëlle Chédeville, Amieleena Chhabra, Julie Couture, Paul Dancey, Jean-Jacques De Bruycker, Erkan Demirkaya, Muhammed Dhalla, Ciaran M Duffy, Talal El Tal, Tommy Gerschman, Jaime Guzman, Liane Heale, Julie Herrington, Kristin M Houghton, Adan M Huber, Andrea Human, Nicole Johnson, Roman Jurencak, Bianca Lang, Claire LeBlanc, Lilian Lim, Lily S H Lim, Nadia Luca, Jeanine McColl, Tara McGrath, Tamara McMillan, Megan McPherson, Paivi Miettunen, Kimberly Morishita, Honyan Ng, Jonathan Park, Jean-Philippe Proulx-Gauthier, Johannes Roth, Evelyn Rozenblyum, Dax G Rumsey, Heinrike Schmeling, Rosie Scuccimarri, Gordon Soon, Rebeka Stevenson, Elizabeth Stringer, Herman Tam, Lori B Tucker, Marinka Twilt, Ruud H J Verstegen, Karen Watanabe DuffyAbstract
Objective
To describe the impact of different JIA categories on the psychosocial well-being of children and identify associated factors.
Methods
1072 patients enrolled in the Canadian Alliance of Pediatric Rheumatology Investigators (CAPRI) registry within three months of diagnosis were included. Psychosocial impact of JIA was measured using the Juvenile Arthritis Quality of Life Questionnaire Psychosocial domain (JAQQ-psychosocial, 1=nil to 7=severe). Wilcoxon ranked-sum tests compared scores at enrollment and one year. Hierarchical clustering of standardized z-scores of JAQQ-psychosocial items produced heatmaps. Spearman correlation and linear regression investigated factors associated with JAQQ-psychosocial scores.
Results
At enrollment, median JAQQ-psychosocial was highest for RF+ polyarthritis (3.2, IQR: 1.8-4.4) and lowest for oligoarthritis (1.8, 1-3). Scores improved significantly by one year for RF+ and RF- polyarthritis, psoriatic and systemic arthritis (P < 0.05). JAQQ-psychosocial items clustered into externalizing behaviours, internalizing behaviours, and school-related problems. Heatmaps revealed four clusters with mild (51.0% of patients), moderate (30.6%), severe (9.3%), and very severe (9.1%) JIA psychosocial impact, with the proportions of patients in each cluster varying by JIA category. Most patients improved by 1 year but few patients in each category had persisting or worsening psychosocial impact. Multiple factors correlated with JAQQ-psychosocial scores, and physical disability, fatigue, and pain interference were independently associated with scores at enrollment.
Conclusion
JIA psychosocial impact was most severe at diagnosis, varied by JIA category, and improved by 1 year for many children, but few patients showed persisting or worsening JIA impact. Physical disability, fatigue, and pain interference were independently associated with psychosocial impact.