The objective was to evaluate the readability of easily accessible parent-directed information concerning Robin Sequence (RS) online, compared to the American Medical Association (AMA)-recommended sixth grade (age 11-12) readability level.
Design
A Google search of the term “Pierre Robin Sequence information” was performed. The first ten websites were evaluated using six commonly used readability formulas. Sample texts from three websites were ‘translated’ by the authors, with the aim of achieving a sixth grade readability level.
Main outcome measures
The following outcomes were used: Automated Readability Index (ARI), Coleman Liau Index (CLI), Gunning Fog Score, Simple Measure of Gobbledygook (SMOG), Flesch Kincaid Grade Level (FKGL), and Flesch Reading Ease (FRE) score.
Results
The mean pooled grade level of the top 10 included websites was 12.1 (age 17-18). The overall FRE Index was 45.8, which is equivalent to a College-grade reading level. The mean grade level by each test used was: Flesch-Kincaid Grade Level 11.6 (age 16-17), Gunning Fog Score 13.3 (age 18+), SMOG 10.0 (age 14-15), Coleman-Liau Index 13.8 (age 18+), and ARI 12.0 (age 17-18). The author-translated resources achieved pooled mean grade levels of 6.3-6.5.
Conclusions
Parent-directed online materials concerning RS have a readability in excess of the AMA-recommended sixth grade reading level. Even though the condition is complex, more readable resources are achievable. Coproduction of parent-directed resources in association with public an patient involvement (PPI) contributors is encouraged.
BreugemCCEvansKNPoetsCF, et al.Best practices for the diagnosis and evaluation of infants with robin sequence: A clinical consensus report. JAMA Pediatr. Sep 1 2016;170(9):894-902. doi:https://doi.org/10.1001/jamapediatrics.2016.0796
3.
VatlachSMaasCPoetsCF. Birth prevalence and initial treatment of Robin sequence in Germany: A prospective epidemiologic study. Orphanet J Rare Dis. Jan 17 2014;9:9. doi:https://doi.org/10.1186/1750-1172-9-9
In: Nielsen-Bohlman L, Panzer AM, Kindig DA, eds. Health Literacy: A Prescription to End Confusion. 2004.
7.
DurandMACarpenterLDolanH, et al.Do interventions designed to support shared decision-making reduce health inequalities? A systematic review and meta-analysis. PLoS One. 2014;9(4):e94670. doi:https://doi.org/10.1371/journal.pone.0094670
8.
WeissBDHartGPustRE. The relationship between literacy and health. J Health Care Poor Underserved. Spring 1991;1(4):351-363. doi:https://doi.org/10.1353/hpu.2010.0294
9.
NichollHTraceyCBegleyTKingCLynchAM. Internet use by parents of children with rare conditions: Findings from a study on Parents’ web information needs. J Med Internet Res. Feb 28 2017;19(2):e51. doi:https://doi.org/10.2196/jmir.5834
10.
JaksRBaumannIJuvaltaSDratvaJ. Parental digital health information seeking behavior in Switzerland: A cross-sectional study. BMC Public Health. Feb 21 2019;19(1):225. doi:https://doi.org/10.1186/s12889-019-6524-8
11.
WeissBD. Health literacy and patient safety: help patients understand. 2nd ed.American Medical Association Foundation and American Medical Association; 2007.
12.
VineyD. Get to the top on Google. Nicolas Brealey Publishing; 2008.
SmithEAKincaidJP. Derivation and validation of the automated readability index for Use with technical materials. Hum Factors. 1970;12(5). doi.org/10.1177/001872087001200
16.
ColemanMLiauTL. A computer readability formula designed for machine scoring. Journal of Applied Psychology. 1975;60(2):283-284.
17.
GunningR. The technique of clear writing. McGraw-Hill; 1952.
18.
McLaughlinGH. SMOG Grading - a new readability formula. Journal of Reading. 1969;12(8):639-646.
19.
HedmanAS. Using the SMOG formula to revise a health-related document. American Journal of Health Education. 2008;39(1):61-64.
20.
KincaidJPBrabyRMearsJ. Electronic authoring and delivery of technical information. J Instr Dev. 1988;11(2):8-13.
21.
LavinCVFahyEJAbbasDB, et al.Readability of online patient information relating to cleft palate surgery. Cleft Palate Craniofac J. Mar 2022;59(3):330-335. doi:https://doi.org/10.1177/10556656211013177
22.
WasserburgJRSayeghFSanati-MehrizyPGrazianoFDTaubPJ. Cleft care readability: Can patients access helpful online resources?Cleft Palate Craniofac J. Oct 2021;58(10):1287-1293. doi:https://doi.org/10.1177/1055665620980244
23.
SalehJGornitskyJJalouxCBougieE. Readability and quality assessment of online materials for syndactyly release. Plast Reconstr Surg Glob Open. Jan 2022;10(1):e4050. doi:https://doi.org/10.1097/GOX.0000000000004050
24.
PatelPPHoppeICAhujaNKCiminelloFS. Analysis of comprehensibility of patient information regarding complex craniofacial conditions. J Craniofac Surg. Jul 2011;22(4):1179-1182. doi:https://doi.org/10.1097/SCS.0b013e31821c00e4
25.
D'AlessandroDMKingsleyPJohnson-WestJ. The readability of pediatric patient education materials on the World Wide Web. Arch Pediatr Adolesc Med. Jul 2001;155(7):807-812. doi:https://doi.org/10.1001/archpedi.155.7.807
26.
CisuTIMinginGCBaskinLS. An evaluation of the readability, quality, and accuracy of online health information regarding the treatment of hypospadias. J Pediatr Urol. Feb 2019;15(1):40.e1-40.e6. doi:https://doi.org/10.1016/j.jpurol.2018.08.020
27.
SanadSAMokhtarAMAlharbiMOBukhariAFZawawiF. Qualitative assessment of quality and readability of patient-directed online resources for cochlear implants in Children. Otolaryngol Head Neck Surg. Jan 30 2023. doi:https://doi.org/10.1002/ohn.251
28.
CorrederaEDavisKSSimonsJPJabbourN. What parents are Reading about laryngomalacia: Quality and readability of internet resources on laryngomalacia. Int J Pediatr Otorhinolaryngol. May 2018;108:175-179. doi:https://doi.org/10.1016/j.ijporl.2018.02.036
29.
ChiEJabbourNAaronsonNL. Quality and readability of websites for patient information on tonsillectomy and sleep apnea. Int J Pediatr Otorhinolaryngol. Jul 2017;98:1-3. doi:https://doi.org/10.1016/j.ijporl.2017.04.031
30.
SolimanLSolimanPMarinGSobtiBSobtiNWooAS. Craniosynostosis: Are online resources readable?Cleft Palate Craniofac J. Feb 6 2023:10556656231154843. doi:https://doi.org/10.1177/10556656231154843
31.
LeBlancTWHessonAWilliamsA, et al.Patient understanding of medical jargon: A survey study of U.S. medical students. Patient Educ Couns. May 2014;95(2):238-242. doi:https://doi.org/10.1016/j.pec.2014.01.014
32.
LinksARCallonWWassermanCWalshJBeachMCBossEF. Surgeon use of medical jargon with parents in the outpatient setting. Patient Education and Counseling. Jun 2019;102(6):1111-1118. doi:https://doi.org/10.1016/j.pec.2019.02.002
33.
SmithSJupiterDCPanchbhaviVKChenJ. Quality and readability of information regarding total ankle arthroplasty available to patients on the internet. Foot Ankle Spec. Jul 17 2022:19386400221109423. doi:https://doi.org/10.1177/19386400221109423
