title: The difference of disease perception by juvenile idiopathic arthritis patients and their parents: analysis of the JAMAR questionnaire.
abstract: BACKGROUND
  The JAMAR (Juvenile Arthritis Multidimensional Assessment Report) has been developed to evaluate the perception of the patient and his parents on different items: well-being, pain, functional status, quality of life, disease activity, disease course, side effects of medication, therapeutic compliance and satisfaction with illness outcome. Our aim was to compare disease's perception by JIA patients and their parents.
  
  
  METHODS
  We included into the study 100 consecutive patients over 7 years of age. We asked both parent and child to complete the JAMAR questionnaire. For each patient we recorded demographic and disease related data. We examined the level of disagreement between children and parents for the quantitative items of the JAMAR: VAS Pain, VAS Disease Activity, VAS Well Being, Juvenile Arthritis Functional Score, HRQoL. Then we looked for a relation between discordance-rate and demographic and clinical variables.
  
  
  RESULTS
  Children and parents' median scores for all five items were similar. Individual dyads agreement was low, with a large amount of pairs (80) discordant for at least one item. We found higher MD VAS and JADAS in more discordant dyads, suggesting that when the disease is more active discordance between child and parent increase.
  
  
  CONCLUSIONS
  The JAMAR questionnaire is an important tool that helps clinicians to detect divergent child and parent's disease perceptions. It is essential that both patients and parents fill the JAMAR questionnaire for a complete clinical and psychosocial evaluation.
authors.affiliation: Unité Romande d'Immuno-Rhumatologie Pédiatrique (URIRP), Département Médico - Chirurgical de Pédiatrie (DMCP), Centre Hospitalier Universitaire Vaudois CHUV, University of Lausanne, Rue du Bugnon 46, 1011 Lausanne, University of Geneva, Geneva, Switzerland. federica.vanoni@chuv.ch.
authors.forename: Federica
authors.initials: F
authors.lastname: Vanoni
authors.affiliation: Groupe de recherche sur la santé des adolescents (GRSA), Institut universitaire de médecine sociale et préventive (IUMSP), Bâtiment Biopôle 2, Rte de la Corniche 10, 1010, Lausanne, Switzerland. joan-carles.suris@chuv.ch.
authors.forename: Joan-Carles
authors.initials: JC
authors.lastname: Suris
authors.affiliation: Unité Romande d'Immuno-Rhumatologie Pédiatrique (URIRP), Département Médico - Chirurgical de Pédiatrie (DMCP), Centre Hospitalier Universitaire Vaudois CHUV, University of Lausanne, Rue du Bugnon 46, 1011 Lausanne, University of Geneva, Geneva, Switzerland. annette.von-scheven@chuv.ch.
authors.forename: Annette
authors.initials: A
authors.lastname: von Scheven-Gête
authors.affiliation: Ligue genevoise contre le rhumatisme, Rue Merle d'Aubigné 22, 1207, Genève, Switzerland. b.fonjallaz@laligue.ch.
authors.forename: Béatrice
authors.initials: B
authors.lastname: Fonjallaz
authors.affiliation: Unité Romande d'Immuno-Rhumatologie Pédiatrique (URIRP), Département Médico - Chirurgical de Pédiatrie (DMCP), Centre Hospitalier Universitaire Vaudois CHUV, University of Lausanne, Rue du Bugnon 46, 1011 Lausanne, University of Geneva, Geneva, Switzerland. michael.hofer@chuv.ch.
authors.forename: Michaël
authors.initials: M
authors.lastname: Hofer
mesh_terms: D000293:Adolescent; D000328:Adult; D001171:Arthritis, Juvenile / Q000523:psychology*; D002648:Child; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D010349:Patient Compliance / Q000523:psychology*; D010465:Perception; D011788:Quality of Life; D012189:Retrospective Studies; D011795:Surveys and Questionnaires