EC Dental Science

Objective: To review and evaluate the level of information on the oral manifestations of Papillon-Lefevre syndrome (PLS) that is available online, as well as its quality, readability, and content.

Methods: An online search was conducted using three different search engines and three distinct search terms about the oral manifestations of Papillon-Lefevre syndrome. The first 100 websites for each search engine and term were analyzed in duplicate. We use the available websites if there are fewer than 100 websites in each engine. Three different tools were used to assess the quality of each website. First, the DISCERN tool, second, the Journal of the American Medical Association (JAMA) website analysis standards, and third, the Health on the Net (HON) Seal. Four different measures were used to evaluate readability: the Flesch Reading Ease Score (FRES), the Flesch Kincaid Grade Level (FKGL), the Simplified Measure of Gobbledygook (SMOG), and the Coleman-Liau Index (CLI).

Results: 15 websites out of 724 remained after applying the exclusion criteria for all the three keywords for three different search engines. overall DISCERN scores for all 15 websites were 1.7 ± 1.23. The HON seal was presented only on one website. Only 5 (33.3%) out of 15 websites achieved all four JAMA criteria. The FRES measure revealed that only two out of 15 websites had a standard level of readability, while the remaining 13 had readability scores ranging from difficult to very difficult.

Conclusion: The Information about Papillon-Lefevre syndrome that is currently available online is typically of poor quality and contains little information about the oral manifestations of the syndrome. The readability of the information that was available online failed to meet the standards that would enable the public to easily understand and read it. The current study's shortcomings must be addressed to create a web-based resource for the oral manifestation of papillon Lefevre syndrome.

Keywords: Papillon-Lefevre Syndrome; Online Information; Quality; Readability

1. Sreeramulu B., et al. “Papillon Lefèvre syndrome: Clinical presentation and management options”. Clinical, Cosmetic and Investigational Dentistry 7 (2015): 75-81.
2. Chedid JCA., et al. “Papillon-Lefèvre syndrome: Diagnosis, dental management, and a case report”. Case Reports in Dentistry (2019).
3. Giannetti L., et al. “Papillon-Lefèvre syndrome: Oral aspects and treatment”. Dermatologic Therapy 33 (2020).
4. Cline RJW and Haynes KM. “Consumer health information seeking on the Internet: the state of the art”. Health Education Research6 (2001): 671-692.
5. De Boer MJ., et al. “Patients’ use of the Internet for pain-related medical information”. Patient Education and Counseling1 (2007): 86-97.
6. Fox S and Duggan M. “Health Online 2013 35% of U.S. adults have gone online to figure out a medical condition; of these, half followed up with a visit to a medical professional”. 15 (2013).
7. Woodward-Kron R., et al. “Educating the patient for health care communication in the age of the world wide web: a qualitative study”. Academic Medicine2 (2014): 318-325.
8. Abdul NS., et al. “Papillon-Lefévre Syndrome: A Rare Case Report and a Brief Review of Literature”. Cureus (2022).
9. Leira Y., et al. “Available patient-centered Internet information on peri-implantitis. Can our patients understand it?” Clinical Oral Investigations4 (2019): 1569-1574.
10. Charnock Deborah., et al. “The DISCERN handbook: quality criteria for consumer health information on treatment choices”. Radcliffe Medical (1998): 51.
11. Silberg WM., et al. “Assessing, Controlling, and Assuring the Quality of Medical Information on the Internet: Caveant Lector et Viewor-Let the Reader and Viewer Beware”. The Journal of the American Medical Association15 (1997): 1244-1245.
12. Albright J., et al. “Readability of patient education materials: implications for clinical practice”. Applied Nursing Research3 (1996): 139-143.
13. Peter Kincaid Robert Fishburne., et al. “Derivation of New Readability Formulas (Automated Readability Index, Fog Count and Flesch Reading Ease Formula) For Navy Enlisted Personnel (1935).
14. Harry G and Laughlin MC. SMOG Grading-a New Readability Formula (1969).
15. Coleman M and Liau L. “A Computer Readability Formula Designed for Machine Scoring”. Journal of Applied Psychology 60 (1975).
16. Cunningham D., et al. “Surveys of physicians and electronic health information”. The New England Journal of Medicine9 (2010): 859-860.
17. Hesse BW., et al. “Trust and sources of health information: the impact of the Internet and its implications for health care providers: findings from the first Health Information National Trends Survey”. Archives of Internal Medicine22 (2005): 2618-2624.
18. Bader JL and Theofanos MF. “Searching for cancer information on the internet: analyzing natural language search queries”. Journal of Medical Internet Research4 (2003): 80-108.
19. Eysenbach G and Kohler C. “What is the prevalence of health-related searches on the World Wide Web? Qualitative and quantitative analysis of search engine queries on the Internet”. AMIA Annual Symposium Proceedings (2003): 225.
20. Pauer F., et al. “Rare Diseases on the Internet: An Assessment of the Quality of Online Information”. Journal of Medical Internet Research1 (2017).
21. Ramesh K., et al. “Papillon–Lefèvre syndrome mimicking psoriasis - A rare case report”. Indian Journal of Dental Research4 (2013): 211-214.
22. Litzkendorf S., et al. “Use and importance of different information sources among patients with rare diseases and their relatives over time: a qualitative study”. BMC Public Health1 (2020).
23. Morgan T., et al. “Using the Internet to Seek Information About Genetic and Rare Diseases: A Case Study Comparing Data From 2006 and 2011”. JMIR Research Protocols1 (2014).
24. Irvine G and Irvine G. “An Ultra-rare Disease? Where Do We Go from Here?” Tremor and Other Hyperkinetic Movements (2013): 3.
25. Molster C., et al. “Survey of healthcare experiences of Australian adults living with rare diseases”. Orphanet Journal of Rare Diseases1 (2016): 1-12.
26. Garau R. “The medical experience of a patient with a rare disease and her family”. Orphanet Journal of Rare Diseases1 (2016): 1-3.
27. Dhanrajani PJ. “Papillon-Lefevre syndrome: clinical presentation and a brief review”. Oral Surgery, Oral Medicine, Oral Pathology, Oral Radiology, and Endodontology 108.1 (2009).
28. Yardi S., et al. “Determining parents’ patterns of behaviour when searching for online information on their child’s health”. Journal of Paediatrics and Child Health11 (2018): 1246-1254.
29. Jaks R., et al. “Parental digital health information seeking behavior in Switzerland: A cross-sectional study”. BMC Public Health1 (2019): 1-11.
30. Park E., et al. “Health-Related Internet Use by Informal Caregivers of Children and Adolescents: An Integrative Literature Review”. Journal of Medical Internet Research3 (2016): e57.
31. Kubb C and Foran HM. “Online Health Information Seeking by Parents for Their Children: Systematic Review and Agenda for Further Research”. Journal of Medical Internet Research8 (2020).
32. Hattab FN. “Papillon-Lefèvre syndrome: from then until now”. Stomatological Disease and Science (2019).
33. Dubowicz A and Schulz PJ. “Medical Information on the Internet: A Tool for Measuring Consumer Perception of Quality Aspects”. Interactive Journal of Medical Research1 (2015): e8.
34. Ayonrinde O. “Patients in cyberspace: Information or confusion? Postgraduate Medical Journal”. BMJ Publishing Group 74 (1998): 449-450.
35. Charnock D., et al. “DISCERN: an instrument for judging the quality of written consumer health information on treatment choices”. Journal of Epidemiology and Community Health 53 (1999).
36. Ademiluyi G., et al. “Evaluating the reliability and validity of three tools to assess the quality of health information on the Internet (2003).
37. Lorenzo-Pouso AI., et al. “Patient-centered web-based information on oral lichen planus: Quality and readability”. Medicina Oral, Patologia Oral, Cirugia Bucal4 (2019): e461.