Online Information on the Treatment of Burning Mouth Syndrome: Quality and Readability

Aims: To evaluate the quality and readability of online information about the treatment of burning mouth syndrome (BMS). Methods: An internet search using the phrase “burning mouth syndrome treatment” was carried out on the Google search engine (www.google.co.uk) on 8 June 2015, and the first 100 websites listed were examined. Data collection included DISCERN score, the Journal of the American Medical Association (JAMA) benchmarks for website analysis score, the presence of the Health on the Net (HON) Foundation seal, and the Flesch Reading Ease Score (FRES). Descriptive statistics were performed using Microsoft Office Excel. Results: The search strategy initially yielded 635,000 links; following the application of the exclusion criteria, 53 sites remained for analysis. The overall DISCERN score varied between websites, with half of all websites achieving an overall score of 2 and none of these websites achieving the maximum score of 5. The mean score ± standard deviation (SD) was 2.4 ± 0.7. Only 10 (18.9%) of the websites achieved the four JAMA benchmarks while 3 (5.7%) of the websites did not achieve any of them. Only 9 (17%) displayed the HON seal. The FRES of the websites ranged from 32.4 to 82.2; the mean ± SD rating was 55.4 ± 10.7, which is considered to reflect fairly difficult reading. Conclusion: The information available online about BMS is of questionable quality and content. Perhaps engaging patients in determining what type and format of information they desire when searching online for health information could guide clinicians and researchers alike in providing reliable and readable information sources.

burning mouth syndrome; online health information; patient information; quality of life; shared decision-making

1. Headache Classification Committee of the International Headache Society (IHS). The International Classification of Headache Disorders, 3rd edition (beta version). Cephalalgia 2013;33:629–808.

2. Scala A, Checchi L, Montevecchi M, Marini I, Giamberardino MA. Update on burning mouth syndrome: Overview and patient management. Crit Rev Oral Biol Med 2003;14:275–291.

3. Renton T. Burning Mouth Syndrome. Rev Pain 2011;5:12–17.

4. Speciali JG, Stuginski-Barbosa J. Burning mouth syndrome. Curr Pain Headache Rep 2008;12:279–284.

5. Klasser GD, Epstein JB, Villines D. Diagnostic dilemma: The enigma of an oral burning sensation. J Can Dent Assoc 2011;77:b146.

6. Gao J, Chen L, Zhou J, Peng J. A case-control study on etiological factors involved in patients with burning mouth syndrome. J Oral Pathol Med 2009;38:24–28.

7. Mignogna MD, Fedele S, Lo Russo L, Leuci S, Lo Muzio L. The diagnosis of burning mouth syndrome represents a challenge for clinicians. J Orofac Pain 2005;19:168–173.

8. Klasser GD, Epstein JB, Villines D, Utsman R. Burning mouth syndrome: A challenge for dental practitioners and patients. Gen Dent 2011;59:210–220.

9. Ni Riordain R, Moloney E, O’Sullivan K, McCreary C. Burning mouth syndrome and oral health-related quality of life: Is there a change over time? Oral Dis 2010;16:643–647.

10. Stav K, Siegel YI, Beberashvili I, Sella HZ, Zisman A. Provision of information leaflet before urodynamic study reduces the pre-examination anxiety level. Neurourol Urodyn 2016;35: 805–808.

11. Garcia S. The effects of education on anxiety levels in patients receiving chemotherapy for the first time: An integrative review. Clin J Oncol Nurs 2014;18:516–521.

12. Rainie L, Fox S. The online health care revolution. Pew Research Center, 2000. http://www.pewinternet.org/2000/11/26/the-online-health-care-revolution/. Accessed 1 February 2017.

13. Fox S, Rainie L. E-patients and the online health care revolution. Physician Exec 2002;28:14–17.

14. Minto C, Bauce B, Calore C, et al. Is Internet use associated with anxiety in patients with and at risk for cardiomyopathy?Am J Heart 2015;170:87–95.

15. Ni Riordain R, McCreary C. Head and neck cancer information on the internet: Type, accuracy and content. Oral Oncol 2009;45:675–677.

16. Charnock D, Shepperd S, Needham G, Gann R. DISCERN: An instrument for judging the quality of written consumer health information on treatment choices. J Epidemiol Community Health 1999;53:105–111.

17. Silberg WM, Lundberg GD, Musacchio RA. Assessing, controlling, and assuring the quality of medical information on the Internet: Caveant lector et viewor—Let the reader and viewer beware. JAMA 1997;277:1244–1245.

18. Health on the Net Foundation. HONcode section for medical professionals. http://www.hon.ch/HONcode/Pro/intro.html. Accessed 1 February 2017.

19. Flesch R. A new readability yardstick. J Appl Psychol 1948; 32:221–233.

20. Mehta P, Manning L. Realising the Value: A New Relationship with Patients and Communities. NHS England, 2014. http://www.england.nhs.uk/wp-content/uploads/2014/11/realising-value-spec-11-14.pdf. Accessed 1 February 2017.

21. Mullen PD. Compliance becomes concordance. BMJ 1997; 314:691–692.

22. Nicholas D, Huntington P, Gunter B, Withey R, Russell C. The British and their use of the web for health information and advice: A survey. Aslib Proc 2003;55:261–276.

23. Glasgow RE, Kurz D, King D, et al. Twelve-month outcomes of an Internet-based diabetes self-management support program. Patient Educ Couns 2012;87:81–92.

24. Nolan T, Dack C, Pal K, et al. Patient reactions to a web-based cardiovascular risk calculator in type 2 diabetes: A qualitative study in primary care. Br J Gen Pract 2015;65:e152–e160.

25. Riva S, Camerini AL, Allam A, Schulz PJ. Interactive sections of an Internet-based intervention increase empowerment of chronic back pain patients: Randomized controlled trial. J Med Internet Res 2014;16:e180.

26. Ziebland S, Lavie-Ajayi M, Lucius-Hoene G. The role of the Internet for people with chronic pain: Examples from the DIPEx International Project. Br J Pain 2015;9:62–64.

27. Choy E, Perrot S, Leon T, et al. A patient survey of the impact of fibromyalgia and the journey to diagnosis. BMC Health Serv Res 2010;10:102.

28. Chen AT. Information seeking over the course of illness: The experience of people with fibromyalgia. Musculoskeletal Care 2012;10:212–220.

29. Ziebland S, Chapple A, Dumelow C, Evans J, Prinjha S, Rozmovits L. How the internet affects patients’ experience of cancer:A qualitative study. BMJ 2004;328:564.

30. López-Jornet P, Camacho-Alonso F, Lucero-Berdugo M. Quality of life in patients with burning mouth syndrome. J Oral Pathol Med 2008;37:389–394.

31. Ni Riordain R, McCreary C. Patient-reported outcome measures in burning mouth syndrome—a review of the literature. Oral Dis 2013;19:230–235.

32. Oral Lichen Planus Support Group website. http://bcdwp. web.tamhsc.edu/iolpdallas/. Accessed 1 February 2017.

33. NHS Choices. Consent to treatment. National Health Service, 2014. http://www.nhs.uk/Conditions/Consent-to-treatment/Pages/Introduction.aspx. Accessed 1 February 2017.

32. Oral Lichen Planus Support Group website. http://bcdwp. web.tamhsc.edu/iolpdallas/. Accessed 1 February 2017.

33. NHS Choices. Consent to treatment. National Health Service, 2014. http://www.nhs.uk/Conditions/Consent-to-treatment/Pages/Introduction.aspx. Accessed 1 February 2017.

34. General Medical Council UK. Consent guidance: Discussing side effects, complications and other risks. General Medical Council, 2017. http://www.gmc-uk.org/guidance/ethical_ guidance/consent_guidance_discussing_side_effects_and_ complications.asp. Accessed 1 February 2017.