Ellen Dalen Arnstad1,2, Mia Glerup3, Veronika Rypdal4, Suvi Peltoniemi5, Anders Fasth6, Susan Nielsen7, Marek Zak7, Kristiina Aalto5, Lillemor Berntson8, Ellen Nordal4, Troels Herlin3, Pål Richard Romundstad9, Marite Rygg10,11. 1. Department of Pediatrics, Levanger Hospital, Nord-Trøndelag Hospital Trust, Pb 333, 7601, Levanger, Norway. ellen.d.arnstad@ntnu.no. 2. Department of Clinical and Molecular Medicine, NTNU - Norwegian University of Science and Technology, Trondheim, Norway. ellen.d.arnstad@ntnu.no. 3. Department of Pediatrics, Aarhus University Hospital, Aarhus, Denmark. 4. Department of Pediatrics, University Hospital of North Norway and Department of Clinical Medicine, UIT the Arctic University of Norway, Tromsø, Norway. 5. New Children's Hospital, Helsinki University Hospital, Pediatric Research Center, University of Helsinki, Helsinki, Finland. 6. Department of Pediatrics, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden. 7. Department of Pediatrics, Rigshospitalet Copenhagen University Hospital, Copenhagen, Denmark. 8. Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden. 9. Department of Public Health and Nursing, NTNU - Norwegian University of Science and Technology, Trondheim, Norway. 10. Department of Clinical and Molecular Medicine, NTNU - Norwegian University of Science and Technology, Trondheim, Norway. 11. Department of Pediatrics, St. Olavs Hospital, Trondheim, Norway.
Abstract
BACKGROUND: To study fatigue in young adults with juvenile idiopathic arthritis (JIA) 18 years after disease onset, and to compare with controls. METHODS: Consecutive children with onset of JIA between 1997 and 2000, from geographically defined areas of Norway, Sweden, Denmark and Finland were followed for 18 years in a close to population-based prospective cohort study. Clinical features, demographic and patient-reported data were collected. Inclusion criteria in the present study were a baseline visit 6 months after disease onset, followed by an 18-year follow-up with available self-reported fatigue score (Fatigue Severity Scale (FSS), 1-7). Severe fatigue was defined as FSS ≥4. For comparison, Norwegian age and sex matched controls were used. RESULTS: Among 377 young adults with JIA, 26% reported severe fatigue, compared to 12% among controls. We found higher burden of fatigue among participants with sleep problems, pain, poor health, reduced participation in school/work, physical disability, active disease, or use of disease-modifying anti-rheumatic drugs (DMARDs)/biologics/systemic steroids. In contrast, participants without these challenges, had fatigue scores similar to controls. Active disease assessed at all three time points (baseline, 8-year and 18-year follow-up) was associated with higher mean fatigue score and higher percentage of severe fatigue compared to disease courses characterized by periods of inactive disease. Predictors of fatigue at the 18-year follow-up were female sex and diagnostic delay of ≥6 months at baseline, and also pain, self-reported poor health, active disease, and previous/ongoing use of DMARDs/biologics at 8 years. CONCLUSIONS: Fatigue is a prominent symptom in young adults with JIA, with higher fatigue burden among participants with poor sleep, pain, self-reported health problems, active disease, or use of DMARDs/biologics. Participants without these challenges have results similar to controls. Patient- and physician-reported variables at baseline and during disease course predicted fatigue at 18-year follow-up.
BACKGROUND: To study fatigue in young adults with juvenile idiopathic arthritis (JIA) 18 years after disease onset, and to compare with controls. METHODS: Consecutive children with onset of JIA between 1997 and 2000, from geographically defined areas of Norway, Sweden, Denmark and Finland were followed for 18 years in a close to population-based prospective cohort study. Clinical features, demographic and patient-reported data were collected. Inclusion criteria in the present study were a baseline visit 6 months after disease onset, followed by an 18-year follow-up with available self-reported fatigue score (Fatigue Severity Scale (FSS), 1-7). Severe fatigue was defined as FSS ≥4. For comparison, Norwegian age and sex matched controls were used. RESULTS: Among 377 young adults with JIA, 26% reported severe fatigue, compared to 12% among controls. We found higher burden of fatigue among participants with sleep problems, pain, poor health, reduced participation in school/work, physical disability, active disease, or use of disease-modifying anti-rheumatic drugs (DMARDs)/biologics/systemic steroids. In contrast, participants without these challenges, had fatigue scores similar to controls. Active disease assessed at all three time points (baseline, 8-year and 18-year follow-up) was associated with higher mean fatigue score and higher percentage of severe fatigue compared to disease courses characterized by periods of inactive disease. Predictors of fatigue at the 18-year follow-up were female sex and diagnostic delay of ≥6 months at baseline, and also pain, self-reported poor health, active disease, and previous/ongoing use of DMARDs/biologics at 8 years. CONCLUSIONS:Fatigue is a prominent symptom in young adults with JIA, with higher fatigue burden among participants with poor sleep, pain, self-reported health problems, active disease, or use of DMARDs/biologics. Participants without these challenges have results similar to controls. Patient- and physician-reported variables at baseline and during disease course predicted fatigue at 18-year follow-up.
Entities:
Keywords:
Fatigue; Health-related quality of life (HRQoL); Juvenile idiopathic arthritis (JIA); Long-term outcomes; Patient-reported outcomes; Young adults
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