title: Long-term quality of life and functional outcome of patients with juvenile idiopathic arthritis in the biologic era: a longitudinal follow-up study in the Dutch Arthritis and Biologicals in Children Register.
abstract: OBJECTIVE
  To carry out a longitudinal investigation of functional outcome, health-related quality of life (HRQoL) and treatment strategies in JIA patients who started etanercept >5 years ago.
  
  
  METHODS
  We approached patients whose HRQoL changes were described previously in a subanalysis of the Dutch Arthritis and Biologicals in Children register. Recent disease status, co-morbidities and structural damage were retrieved. Disability and HRQoL were assessed by (Childhood) HAQ [(C)HAQ], Child Health Questionnaire, Short Form 36 and Health Utilities Index Mark 3. Changes over time were analysed with linear mixed models.
  
  
  RESULTS
  Forty-three patients (81% response) started etanercept a median 8.5 years ago. At the time of this long-term analysis, median age was 22 years (interquartile range: 18-24 years). HRQoL outcome was similar to HRQoL 15-27 months after the initiation of etanercept; 42% had a (C)HAQ of 0.00 and 67% had achieved inactive disease. Patients reported increasing levels of bodily pain compared with earlier measurements. Unemployment (12%) was comparable to the general population; educational level was higher. Use of biologic agents was as follows: 40% etanercept; 40% other biologic agents; and 20% none. Joint surgery occurred in 14% of patients.
  
  
  CONCLUSIONS
  At a median 8.5 years after the commencement of etanercept treatment, JIA patients maintain most of the acquired improvement in HRQoL. Although disability and disease activity are low, chronic pain remains an issue. Persistence and possible deterioration of radiological damage emphasize the importance of early treatment. The fact that 20% of patients do not use any anti-rheumatic medication shows that clinical remission of medication might be an achievable goal.
authors.affiliation: Department of Paediatrics/Paediatric Rheumatology, Erasmus MC Sophia Children's Hospital, Rotterdam, j.anink@erasmusmc.nl.
authors.forename: Janneke
authors.initials: J
authors.lastname: Anink
authors.affiliation: Department of Paediatrics/Paediatric Rheumatology, Erasmus MC Sophia Children's Hospital, Rotterdam.
authors.forename: Femke H M
authors.initials: FH
authors.lastname: Prince
authors.affiliation: Department of Paediatrics/Paediatric Rheumatology, Erasmus MC Sophia Children's Hospital, Rotterdam.
authors.forename: Maryanne
authors.initials: M
authors.lastname: Dijkstra
authors.affiliation: Department of Paediatrics/Paediatric Rheumatology, Erasmus MC Sophia Children's Hospital, Rotterdam.
authors.forename: Marieke H
authors.initials: MH
authors.lastname: Otten
authors.affiliation: Department of Paediatrics/Paediatric Rheumatology, Erasmus MC Sophia Children's Hospital, Rotterdam.
authors.forename: Marinka
authors.initials: M
authors.lastname: Twilt
authors.affiliation: Department of Paediatrics/Paediatric Rheumatology, Leiden University Medical Centre, Leiden.
authors.forename: Rebecca
authors.initials: R
authors.lastname: ten Cate
authors.affiliation: Department of Internal Medicine, Subdivision of Rheumatology, Maastricht University Medical Centre, Maastricht.
authors.forename: Simone L
authors.initials: SL
authors.lastname: Gorter
authors.affiliation: Department of Paediatrics, Hagaziekenhuis Juliana Children's Hospital, The Hague.
authors.forename: Yvonne
authors.initials: Y
authors.lastname: Koopman-Keemink
authors.affiliation: Department of Paediatrics/Paediatric Rheumatology, Emma Children's Hospital/Academic Medical Centre and Reade location Jan van Breemen, Amsterdam and.
authors.forename: Marion A J
authors.initials: MA
authors.lastname: van Rossum
authors.affiliation: Department of Paediatrics/Paediatric Rheumatology, St Maartenskliniek and Radboud University Medical Centre, Nijmegen, The Netherlands.
authors.forename: Esther P A
authors.initials: EP
authors.lastname: Hoppenreijs
authors.affiliation: Department of Paediatrics/Paediatric Rheumatology, Erasmus MC Sophia Children's Hospital, Rotterdam.
authors.forename: Lisette W A
authors.initials: LW
authors.lastname: van Suijlekom-Smit
mesh_terms: D018771:Arthralgia / Q000453:epidemiology; D001171:Arthritis, Juvenile / Q000188:drug therapy* / Q000453:epidemiology / Q000523:psychology; D001688:Biological Products / Q000627:therapeutic use*; D002648:Child; D002675:Child, Preschool; D004185:Disability Evaluation; D000068800:Etanercept / Q000627:therapeutic use*; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D015994:Incidence; D008137:Longitudinal Studies; D008297:Male; D009426:Netherlands / Q000453:epidemiology; D011446:Prospective Studies; D011788:Quality of Life / Q000523:psychology; D012042:Registries; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D016896:Treatment Outcome
chemical_list: D001688:Biological Products; D000068800:Etanercept
keywords: biologic agent; functional disability; health-related quality of life; juvenile idiopathic arthritis; long-term outcome