Quality and Readability of Online Information on Keratoconus in Portugal

Abstract

INTRODUCTION: Keratoconus is the most common primary corneal ectasia. Nowadays, patients try to look on the Internet for answers to their expectations in diagnosis, treatment and prognosis. However, the webpages are not filtered or submitted to evaluation and quality control before getting published. We aim to evaluate the quality and readability of the online information available for the patients regarding keratoconus.
METHODS: Two independent ophthalmologists and one ophthalmologist supervisor evaluated 31 websites from a Google search by order of appearance with the word “Queratocone”, using 2 quality scores: a quality index of consumer health information (DISCERN) and the Journal of the American Medical Association (JAMA) benchmark, as well as the presence of a quality seal. We also evaluated the readability, using 3 readability scores: FleschKincaid Reading Ease (FRE), FleschKincaid Grade (FKG) and Automated Readability Index (ARI).
RESULTS: We obtained 12 sites (38.70%) from private hospitals or clinics, 5 (16.13%) from online health platforms, 4 (12.90%) from spectacles/contact lenses companies, etc. The average score for each JAMA benchmark item was: 1: 0.48±0.51, 2: 0.32±0.48, 3: 0.03±0.18 and 4: 0.42±0.50; the average final score was: 1.26±1.24. The average score for each DISCERN section was: 1: 17.42±7.56, 2: 15.68±5.68 and 3: 2.45±1.21; the average final score was 35.55±13.63. The mean FRE score was 32.23±12.98, which corresponds to “difficult to read” and to college school level, as well as a concordant mean FKG of 14.72±3.24; the mean ARI was 14.81±4.09, which denotes “professor” level needed to understand the text. Eleven sites (35.48%) exhibited some kind of quality seal and did not show statistically significant better readability or quality scores than sites without quality seal. There was no apparent strong correlation between google ranking and quality and readability scores.
CONCLUSION: The information on keratoconus that is available online to Portuguese speaking patients is, overall, of poor quality and difficult to interpret. Physicians need to be aware that some patients might fully trust their own online research. Ophthalmologists have a shared responsibility to tackle this challenge through multifold efforts, cooperating with different entities and resources to improve the information that is available online and educating our patients on how to find reputable web sites that can help them navigate their life with keratoconus.