Background: It is known that parents and cleft-patients are actively searching for online information and participating in online forums. Since there are no studies available on the quality of online patient information about cleft lip and palate, it is important to evaluate the quality of this information. When quality is lacking, healthcare professionals must refer patients to websites of good quality. Furthermore, by getting a better understanding of the definition of quality according to patients, online information can be adjusted.
Objective: The aim of this study is to determine the quality of online information about cleft lip and palate. Both the quality of online information according to parents and patients, as the opinion of healthcare professionals will be evaluated.
Methods: Phase I – since there is no validated golden standard, a systematic literature search to create a quality criteria-list, was performed. This list was prioritised by 25 cleft parents, 25 patients and 8 cleft-care professionals. Phase II – in a next step 8 cleft parents and 8 patients will be asked to search for online information on cleft lip and palate. Visited websites will be reviewed by participants, regarding the quality criteria-list from phase I. To get insight in the motives of assessing certain websites, participants will be shadowed during this review process and interviewed afterwards. Thereafter, 8 cleft care professionals will review the search results patients and parents found in their search. The professionals will perform the review according to the quality criteria-list from phase I.
Results and conclusions: Since just phase I is finished at date of submitting this abstract, results cannot yet be presented. In analogy with other fields in medicine, we are convinced that the final results of this study will have a serious influence on the way online information about cleft lip and palate will be provided in future.