title: Rationale, design and baseline data of a mixed methods study examining the clinical impact of a brief transition programme for young people with juvenile idiopathic arthritis: the DON'T RETARD project.
abstract: OBJECTIVE
  To describe (1) the content of a transition programme for young people with juvenile idiopathic arthritis (JIA) designed as a brief intervention, (2) the rationale and design of a mixed-methods study evaluating the clinical impact of this transition programme and (3) to provide baseline data of the intervention group.
  
  
  METHODS
  An 'embedded experimental' design is used for the evaluation of the transition programme. A 'one-group pretest-posttest, with a non-equivalent posttest-only comparison group design' is used to quantitatively evaluate the impact of the transition programme, applying both longitudinal and comparative analyses. Subsequently, experiences of adolescents and their parents who participated in the experimental group will be analysed qualitatively using content analysis.
  
  
  METHODS
  Participants in the intervention are recruited at a tertiary care centre in Belgium. The comparison group participants are recruited from one tertiary and three secondary care centres in Belgium.
  
  
  METHODS
  The intervention group consists of 33 young people (25 females; 8 males) with a median age of 16 years. Main diagnoses are persistent or extended oligoarticular JIA (33%), polyarticular JIA (30%), enthesitis-related JIA (21%) or systemic arthritis (15%).
  
  
  METHODS
  The transition programme comprises eight key components: (1) transition coordinator; (2) providing information and education; (3) availability by telephone; (4) information about and contact with an adult care programme; (5) guidance of parents; (6) meeting with peers; (7) transfer plan; and (8) actual transfer to adult care.
  
  
  METHODS
  The primary outcome is health status, as perceived by the adolescents. Secondary outcomes are health status, as perceived by the parents; medication adherence; illness-related knowledge; quality of life; fatigue; promotion of independence; support of autonomy; behavioural control and psychological control.
  
  
  RESULTS
  At baseline, the median score was 69.2 (Q1=60.0;Q3=92.9) on psychosocial health and 68.8 (Q1=56.3; Q3=89.1) on physical health. Rheumatic-specific health scores ranged from 62.5 to 100.
  
  
  CONCLUSIONS
  We present the rationale and design of a study intended to evaluate a transition programme for adolescents with JIA as a brief intervention.
authors.affiliation: Department of Paediatrics, University Hospitals Leuven, Leuven, Belgium.
authors.forename: Deborah
authors.initials: D
authors.lastname: Hilderson
authors.forename: Rene
authors.initials: R
authors.lastname: Westhovens
authors.forename: Carine
authors.initials: C
authors.lastname: Wouters
authors.forename: Kristien
authors.initials: K
authors.lastname: Van der Elst
authors.forename: Eva
authors.initials: E
authors.lastname: Goossens
authors.forename: Philip
authors.initials: P
authors.lastname: Moons
keywords: Paediatrics; Qualitative Research; Rheumatology