Development of the congenital adrenal hyperplasia knowledge assessment questionnaire (CAHKAQ)

The purpose of this study was to develop a validated Congenital Adrenal Hyperplasia Knowledge Assessment Questionnaire (CAHKAQ) that can be used to identify deficits in the knowledge of families living with CAH regarding the disease and its management.

Management of CAH requires good parental and/or patient knowledge and understanding of the disorder, and the action required when clinical problems arise. Effective education initiatives are important in helping families to manage the disorder. However, there are currently no established questionnaires available to assess the knowledge of CAH.

An extensive survey of the literature was conducted to develop a list of questions about CAH. The Delphi technique was used to develop and determine content validity of the CAHKAQ using a panel of 15 nursing and medical experts in endocrinology. The instrument was piloted to test for item variation, meaning and redundancy, and to determine instrument unidimensionality and internal consistency. The questionnaire was distributed to a convenience sample of family members (n = 98) of 36 children/adults with CAH recorded on the database of a large children's hospital endocrine clinic.

Three Delphi rounds were required to achieve final consensus for content validity. The resulting questionnaire contained 22 multiple-choice items and had a Flesch Reading Ease score of 67. Statistical analysis found the instrument to be internally consistent and unidimensional with a reported Cronbach's coefficient alpha of 0.67.

The CAHKAQ is a valid and reliable questionnaire suitable for use in conjunction with education about CAH.

The CAHKAQ will be invaluable in assessing parental and patient knowledge and understanding of the disorder and identifying deficits that can be addressed through education. Further research is required to determine whether the underlying factors of the instrument are consistent with components of CAH knowledge.