Consensus on intake questionnaire data elements in the development of an aerodigestive registry

Objective

To define the essential elements of the intake questionnaire that will be a part of a larger multicenter registry for aerodigestive patients.

Methods

A modified Delphi method was utilized to obtain consensus on the data elements that should warrant inclusion in the final research database. Patient questionnaires from the eight participating institutions were reviewed and individual elements were aggregated into 14 categories.

Results

A total of 198 initial elements were voted on for inclusion. The categories included demographics, respiratory symptoms, gastrointestinal symptoms, ear nose and throat symptoms, feeding, birth history, medical history, surgical history, family history, social history, medications prior to evaluation, devices used prior to evaluation, prior diagnostic evaluations, and prior evaluation by aerodigestive team members. 83 of the 198 elements met consensus for inclusion in the final registry for an inclusion rate of 41.9 %. Three separate rounds of ranking were required to obtain consensus.

Conclusion

The aerodigestive registry is an important initiative that will help foster research and help guide future management. The intake questionnaire of the registry is a critical component of this project, and the consensus obtained during this study should help create a streamlined and efficient registry that will help all aerodigestive patients on a national level.