Tools
Tools
Wickwar, Sadie 
ORCID: https://orcid.org/0000-0001-9307-4532, Buerkle, Katrin, McBain, Hayley, Ciciriello, Sabina, Osborne, Richard H., Wedderburn, Lucy R. and Newman, Stanton P.
(2013)
Adaptation of the methotrexate in rheumatoid arthritis knowledge questionnaire (MiRAK) for use with parents of children with juvenile idiopathic arthritis: A qualitative study.
Pediatric Rheumatology, 11 (1).
ISSN 1546-0096
Abstract
Background: Although Methotrexate (MTX) is one of the most commonly prescribed disease-modifying drugs in JIA no questionnaire exists that assesses the knowledge of parents about this drug. A 60-item questionnaire was recently developed to measure rheumatoid arthritis (RA) patients' knowledge about MTX; the Methotrexate in Rheumatoid Arthritis Knowledge Test (MiRAK; Ciciriello et al. (Arthritis Rheum 62:10-1009, 2010)). This study aimed to adapt the MiRAK for parents of children with JIA.Methods: Adaption of the MiRAK involved: 1) email consultations with clinicians working in the field of paediatric rheumatology (Panel 1) to ascertain the potential adaptations of the MiRAK from a clinical perspective, 2) synthesis of clinicians' suggestions by a panel of experts, researchers and MiRAK developers (Panel 2) to reach consensus on which items needed to be modified and create a draft Methotrexate in Juvenile Idiopathic Arthritis Knowledge Test (MiJIAK), 3) a review of the draft by 5 parents of children with JIA (Panel 3) using the cognitive 'think-aloud' method, 4) a second consultation with Panel 2 to review parents' suggestions and determine the final items.Results: A total of 9 items remained unchanged, e.g. " Methotrexate is effective at relieving joint stiffness" , 19 were deemed inappropriate in the paediatric setting and deleted, e.g. " It is safe to become pregnant 3 weeks after methotrexate has been stopped" , 32 underwent editorial changes largely to indicate that the questionnaire was about the children with JIA, e.g. " If you forget to give a dose of Methotrexate, you can still take it the next day" became " If your child misses a dose of Methotrexate, they can still take it the next day" , and 1 new item was added. A new 42-item questionnaire was produced and was found to be well understood by parents of children with JIA.Conclusions: The systematic modification of the MiRAK, a patient-centred MTX knowledge questionnaire, has generated a comprehensive new questionnaire for use in the JIA setting. The wide consultation process, including cognitive testing, has ensured the tool is both relevant and acceptable to clinicians and will therefore be a valuable addition in understanding the parents' perspective of this treatment in JIA.
| Item Type: | Article |
|---|---|
| Additional Information: | Funding Information: This project was supported by funding from Sparks UK (grant references 05 BLF/ICH01 and 08ICH09) and the Big Lottery Fund UK (grant reference RG/1/ 010135231). The authors would like to acknowledge members of the CHARMS (Childhood Arthritis Response to Medication Study) study team for assistance with carrying out the study. The authors would also like to acknowledge and thank all the parents that took part in interviews for their valuable contribution to the research. |
| Uncontrolled Keywords: | cognitive interviews,juvenile idiopathic arthritis,methotrexate,parent measures,questionnaire adaptation,pediatrics, perinatology, and child health,rheumatology,immunology and allergy ,/dk/atira/pure/subjectarea/asjc/2700/2735 |
| Faculty \ School: | Faculty of Medicine and Health Sciences > Norwich Medical School |
| Related URLs: | |
| Depositing User: | LivePure Connector |
| Date Deposited: | 04 Sep 2024 14:34 |
| Last Modified: | 25 Sep 2024 18:07 |
| URI: | https://ueaeprints.uea.ac.uk/id/eprint/96567 |
| DOI: | 10.1186/1546-0096-11-27 |
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