The adaption of the MiRAK for use with parents of children with JIA was achieved through the use of consultations with clinicians to identify necessary changes from a medical perspective and researchers to ensure clarity and consistency. These consultations were followed by cognitive think-aloud interviews with parents of children with JIA to obtain opinions from the target population about the clarity and acceptability of the new questionnaire. This resulted in the new 42-item Methotrexate in Juvenile Idiopathic Arthritis Knowledge Test (MiJIAK), which parents found clear to understand and was acceptable to clinicians in the field.
This is the first questionnaire designed to measure MTX knowledge specifically in parents of children with JIA. Such a questionnaire can be used in the context of JIA to highlight the educational needs of an individual or population to ensure knowledge from the parent’s perspective. Ensuring that parents have good knowledge lays the foundation for appropriate administration of medication and potentially reduces anxiety around MTX and its administration. The questionnaire can also be used to evaluate the effectiveness of educational interventions undertaken with parents responsible for administering their child’s MTX.
The think-aloud interviews permit the gathering of critical data about how to adapt the MiRAK using the immediate and honest thoughts of parents. Involving the target group in this way generated insight into the appropriateness of the MiJIAK for use with parents and ensured that the questionnaire had good content validity.
The Delphi method used offered a rigorous process by which to distribute and process data and to reach consensus about which items to include in the revised questionnaire and how best to word them. This method also allowed discussions to take place between members of the panel that could not be present physically, such as those based in Australia.
There are however some limitations in the study’s design. Firstly, the think-aloud interviews generated varying amounts of data from parents. The technique as described by Willis 1999;  involves a process of participants engaging with the research by providing a running commentary of their thoughts about a particular topic, which assumes participants are highly cognitively able and can be successfully engaged. The abilities of some of the parents may not have met these requirements, thus generating data that differed in both quantity and quality.
Secondly, any conclusions that were made about adapting specific questionnaire items were based on the suggestions of a small sample of mostly well educated middle aged adults, which may not have been representative of the population. A larger, more diverse sample may have been more appropriate. The questionnaire was found to be suitable for the reading level of 15 to 16 year olds, which may be limiting for some respondents.
Thirdly, this adaptation study does not include the validation and field testing of the revised questionnaire. Further testing in a variety of settings will provide additional data on the validity and reliability of the questionnaire and thus generate data regarding the utility of the tool . Given the rigorous development of the tool, including a strong reliance on the most recent published literature and input from experienced rheumatologists from both the UK and Australia, the tool has very good face and content validity and is likely to reveal important information about the accuracy of the knowledge of parents of children with JIA.