title: Patients and professionals have different views on online patient information about cleft lip and palate (CL/P).
abstract: Parents of children with a cleft lip and/or palate (CL/P) and patients with CL/P actively search for online information about CL/P. The quality of this information has not been sufficiently evaluated. The aim of this study was to define quality criteria for online information about CL/P and assess the quality of frequently accessed websites. Patients, parents, and professionals were equally involved in all stages of this study. A literature review was performed to obtain known quality criteria for online information. These criteria were prioritized by patients, parents, and professionals. The most important criteria were used to rate the quality of four websites on CL/P. Forty-two quality items were extracted from the literature. Patients, parents, and professionals agreed on the importance of 16 of these items. New groups of patients, parents, and professionals assessed four websites on CL/P. Although the groups were like-minded in their overall assessment of the quality of the websites, distinct differences emerged between the groups in relation to certain items. This study shows the importance of patient participation in healthcare research, as well as a feasible approach to do so. Involving patients in composing online health information will set different priorities, which is necessary in establishing high quality information.
authors.affiliation: Cleft and Craniofacial Centre, Radboud University Medical Centre, Nijmegen, Netherlands. Electronic address: Stefanie.vandenbosch@radboudumc.nl.
authors.forename: S
authors.initials: S
authors.lastname: van den Bosch
authors.affiliation: Cleft and Craniofacial Centre, Erasmus Medical Centre, Rotterdam, Netherlands.
authors.forename: M
authors.initials: M
authors.lastname: Koudstaal
authors.affiliation: Cleft and Craniofacial Centre, Erasmus Medical Centre, Rotterdam, Netherlands.
authors.forename: S
authors.initials: S
authors.lastname: Versnel
authors.affiliation: Cleft and Craniofacial Centre, Radboud University Medical Centre, Nijmegen, Netherlands.
authors.forename: T
authors.initials: T
authors.lastname: Maal
authors.affiliation: Cleft and Craniofacial Centre, Radboud University Medical Centre, Nijmegen, Netherlands.
authors.forename: T
authors.initials: T
authors.lastname: Xi
authors.affiliation: Department of Obstetrics and Gynaecology, Radboud University Medical Centre, Nijmegen, Netherlands.
authors.forename: W
authors.initials: W
authors.lastname: Nelen
authors.affiliation: Cleft and Craniofacial Centre, Radboud University Medical Centre, Nijmegen, Netherlands.
authors.forename: S
authors.initials: S
authors.lastname: Bergé
authors.affiliation: Scientific Institute for Quality of Healthcare, Radboud University Medical Centre, Nijmegen, Netherlands.
authors.forename: M
authors.initials: M
authors.lastname: Faber
mesh_terms: D001291:Attitude of Health Personnel; D002971:Cleft Lip; D002972:Cleft Palate; D000074522:Consumer Health Informatics / Q000592:standards*; D006801:Humans; D020407:Internet / Q000592:standards*; D010290:Parents; D011795:Surveys and Questionnaires
keywords: Health 2.0; Internet; Medicine 2.0; cleft lip; cleft palate; online information; patient participation; quality of online information