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Adaptation of the methotrexate in rheumatoid arthritis knowledge questionnaire (MiRAK) for use with parents of children with juvenile idiopathic arthritis: a qualitative study

Sadie Wickwar1, Katrin Buerkle1, Hayley McBain12, Sabina Ciciriello4, Richard H Osborne5, Lucy R Wedderburn3 and Stanton P Newman1*

Author Affiliations

1 Centre for Health Services Research, School of Health Sciences, City University, College Building, Room A224, Northampton Square, London, EC1V 0HB, UK

2 Community Health Newham, East London Foundation Trust, London, UK

3 UCL Institute of Child Health, 30 Guilford Street, London, WC1N 1EH, UK

4 Department of Rheumatology, Royal Melbourne Hospital, Victoria, Australia

5 Public Health Innovation, Population Strategic Research Centre, School of Health & Social Development, Deakin University, Victoria, Australia

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Pediatric Rheumatology 2013, 11:27  doi:10.1186/1546-0096-11-27

Published: 3 July 2013

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.

Keywords:
Juvenile idiopathic arthritis; Questionnaire adaptation; Methotrexate; Cognitive interviews; Parent measures