Patients and professionals have different views on online patient information about cleft lip and palate

Abstract

Background: Patients with cleft lip and palate (CLP) and their parents are actively searching for online information about CLP. For many conditions the quality of online information has been evaluated. However, the quality of online information on CLP is unexplored. Furthermore in the well-known quality assessment checklists, the patients’ perspectives on quality were not taken in account. In the current shift towards patient-centred care, involving patients in the evaluation and development of online information is a logical next step. To be able to evaluate the quality of online information, quality needs to be defined by the end-users of this information. Objective: The aims of this study are to define quality criteria for online information and assess the quality of frequently accessed online information sources. Patients, parents and professionals are equally involved in all stages of this study. Methods: A literature review was performed to distillate the most relevant quality criteria. These criteria were prioritised on relevance by patients (n = 25), parents (n = 25) and professionals (n = 9). The most important quality criteria were subsequently used by patients (n = 20), parents (n = 20) and professionals (n = 20) to rate existing online CLP information. Results: Distinct differences in prioritised criteria and evaluation of information between the three groups emerged. For instance professionals find reliability criteria of high importance, while patients and parents don’t. Privacy criteria are of importance for patients and parents, not for professionals. Conclusions: This study shows the importance of patient–participation in healthcare research, as well as a feasible approach to do so.