The difference of disease perception by juvenile idiopathic arthritis patients and their parents : analysis of the JAMAR questionnaire.

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Version: Final published version
Serval ID
serval:BIB_2126A3DCEE55
Type
Article: article from journal or magazin.
Collection
Publications
Institution
Title
The difference of disease perception by juvenile idiopathic arthritis patients and their parents : analysis of the JAMAR questionnaire.
Journal
Pediatric Rheumatology Online Journal
Author(s)
Vanoni F., Suris J.C., von Scheven-Gête A., Fonjallaz B., Hofer M.
ISSN
1546-0096 (Electronic)
ISSN-L
1546-0096
Publication state
Published
Issued date
2016
Peer-reviewed
Oui
Volume
14
Number
1
Pages
2
Language
english
Notes
Publication Status: epublish
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.
CONCLUSION: 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.
Pubmed
Web of science
Open Access
Yes
Create date
29/01/2016 11:49
Last modification date
20/08/2019 12:57
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