The objective of this study is to evaluate online educational resources on cleft lip and palate teams.
Design
A Cross-Sectional Study.
Setting
An International, Multi-Institutional Study.
Participants
All American Cleft Palate and Craniofacial Association-approved teams with websites.
Interventions
None
Main Outcome Measures
Websites were assessed for patient education and support content. Affiliation between presence of materials and U.S. Newsweek Top 100 Hospitals was also assessed.
Results
187 teams were included. Presence of educational videos were available in 29.4% of websites, educational infographics in 18.2%, written materials in 66.8%, perioperative instructions in 19.3%, diagnosis information in 34.8% and treatment information in 63.1%. Information on team members were available on 77.0% of websites, resources in languages other than English in 38.5%, and support group resources in 25.7%. Cleft lip and palate diagnosis information was significantly associated with geographic region, with the largest impact from the West region (P = .03). There was a significant difference between teams affiliated with U.S. Newsweek Top 100 hospitals: Top 100 hospitals had a higher presence of educational infographics, perioperative instructions, definitions, diagnosis, and treatment (P < .01). There was no significant difference between presence of educational videos (P = .37).
Conclusion
While many websites had basic educational materials, very few included detailed information on peri-operative planning, as well as additional forms of information including videos, infographics, and non-English languages. Providing comprehensive patient education materials online is an important supplement for patients with cleft lip and palate and should be prioritized by cleft teams.
CoppolaAMontalciniTGallottiP, et al.A comprehensive therapeutic patient education may improve wound healing and reduce ulcer recurrence and mortality in persons with type 2 diabetes. Can J Diabetes. Published onlineAugust 2022;23:S1499–S2671. (22)00244-1. doi:https://doi.org/10.1016/j.jcjd.2022.08.004.
2.
FabbriMMuradMHWennbergAM, et al.Health literacy and outcomes among patients with heart failure: A systematic review and meta-analysis. JACC Heart Fail. 2020;8(6):451‐460. doi:https://doi.org/10.1016/j.jchf.2019.11.007
3.
MoserDKRobinsonSBiddleMJ, et al.Health literacy predicts morbidity and mortality in rural patients with heart failure. J Card Fail. 2015;21(8):612‐618. doi:https://doi.org/10.1016/j.cardfail.2015.04.004
4.
WuJRHolmesGMDeWaltDA, et al.Low literacy is associated with increased risk of hospitalization and death among individuals with heart failure. J Gen Intern Med. 2013;28(9):1174‐1180. doi:https://doi.org/10.1007/s11606-013-2394-4
5.
Reinfeld-KirkmanNKalucyERoegerL. The relationship between self-reported health status and the increasing likelihood of south Australians seeking internet health information. Aust N Z J Public Health. 2010;34(4):422‐426. doi:https://doi.org/10.1111/j.1753-6405.2010.00576.x
6.
CohenRAAdamsPF. Use of the internet for health information: United States, 2009. NCHS Data Brief. 2011(66):1‐8.
7.
DelemereEMaguireR. Caregivers of children feel confident about using the internet for health information. Health Inf Libr J. Published onlineApril 8, 2022. doi:https://doi.org/10.1111/hir.12430
8.
HaqueMKhanSSandhuAArmstrongK. Social media and the practice of pediatric physical medicine and rehabilitation in the COVID-19 pandemic: A new era in patient-care. J Pediatr Rehabil Med. Published onlineAugust 24, 2022. doi:https://doi.org/10.3233/PRM-220050
9.
OzduranEBüyükçobanS. A content analysis of the reliability and quality of YouTube videos as a source of information on health-related post-COVID pain. PeerJ. 2022;10:e14089. doi:https://doi.org/10.7717/peerj.14089
10.
TabatabaeiSAHFischerPWattendorfS, et al.Automatic detection and monitoring of abnormal skull shape in children with deformational plagiocephaly using deep learning. Sci Rep. 2021;11(1):17970. doi:https://doi.org/10.1038/s41598-021-96821-7
11.
CanfieldMAHoneinMAYuskivN, et al.National estimates and race/ethnic-specific variation of selected birth defects in the United States, 1999-2001. Birt Defects Res A Clin Mol Teratol. 2006;76(11):747‐756. doi:https://doi.org/10.1002/bdra.20294
12.
LehtonenVLithoviusRHAutioTJ, et al.Middle ear findings and need for ventilation tubes among pediatric cleft lip and palate patients in northern Finland. J Cranio-Maxillo-fac Surg Off Publ Eur Assoc Cranio-Maxillo-fac Surg. 2016;44(4):460‐464. doi:https://doi.org/10.1016/j.jcms.2016.01.006
13.
Al-KharboushGHAl-BalkhiKMAl-MoammarK. The prevalence of specific dental anomalies in a group of Saudi cleft lip and palate patients. Saudi Dent J. 2015;27(2):75‐80. doi:https://doi.org/10.1016/j.sdentj.2014.11.007
14.
TindlundRSHolmefjordAErikssonJCHJohnsonGEVindenesH. Interdisciplinary evaluation of consecutive patients with unilateral cleft lip and palate at age 6, 15, and 25 years: A concurrent standardized procedure and documentation by plastic surgeon; speech and language pathologist; ear, nose, and throat specialist; and orthodontist. J Craniofac Surg. 2009;20(Suppl 2):1687‐1698. doi:https://doi.org/10.1097/SCS.0b013e3181b3edb5
15.
MeiyappanVLittleTAJacksonP. Evaluation of website information provided by paediatric surgery centres in Australia and New Zealand. ANZ J Surg. 2019;89(9):1119‐1121. doi:https://doi.org/10.1111/ans.15012
16.
Hoyos-MartinezAHoyosLRPutraM, et al.Availability of fertility preservation information on the websites of U.S. News and world report top-ranked pediatric cancer programs. J Adolesc Young Adult Oncol. 2021;10(1):66‐70. doi:https://doi.org/10.1089/jayao.2020.0003
LloydMSLaffertyKHortonJNoonsPDoverSEvansM. Empowerment of parents of children with craniosynostosis by objective scoring of patient information websites. J Craniofac Surg. 2016;27(4):874‐875. doi:https://doi.org/10.1097/SCS.0000000000002623
22.
KuterBAtesciAAEdenE. Quality and reliability of web-based information regarding restorative treatment in pediatric patients. Eur Oral Res. 2021;55(3):104‐109. doi:https://doi.org/10.26650/eor.2021812053
23.
KeaverLCallaghanHWalshLHoulihanC. Nutrition guidance for cancer patients and survivors-A review of the websites of Irish healthcare and charitable organisations and cancer centres. Eur J Cancer Care (Engl). 2020;29(2):e13216. doi:https://doi.org/10.1111/ecc.13216
AlshehriRAAlanaziAT. Asthma Patients’ use of cell phone features and their willingness to use them for self-management. Cureus. 2022;14(3):e23292. doi:https://doi.org/10.7759/cureus.23292
26.
DinakrismaAALaksmiPWAbdielT, et al.The role of digital mobile technology in elderly health management among health care workers in Indonesia: Analysis of knowledge, attitudes, and practice. Digit Health. 2022;8:20552076221102772. doi:https://doi.org/10.1177/20552076221102771
27.
DowseREhlersM. Medicine labels incorporating pictograms: Do they influence understanding and adherence?Patient Educ Couns. 2005;58(1):63‐70. doi:https://doi.org/10.1016/j.pec.2004.06.012
28.
DelpCJonesJ. Communicating information to patients: The use of cartoon illustrations to improve comprehension of instructions. Acad Emerg Med Off J Soc Acad Emerg Med. 1996;3(3):264‐270. doi:https://doi.org/10.1111/j.1553-2712.1996.tb03431.x
29.
HoutsPSBachrachRWitmerJTTringaliCABucherJALocalioRA. Using pictographs to enhance recall of spoken medical instructions. Patient Educ Couns. 1998;35(2):83‐88. doi:https://doi.org/10.1016/s0738-3991(98)00065-2
30.
HoutsPSWitmerJTEgethHELoscalzoMJZaboraJR. Using pictographs to enhance recall of spoken medical instructions II. Patient Educ Couns. 2001;43(3):231‐242. doi:https://doi.org/10.1016/s0738-3991(00)00171-3
31.
Miedany YEGaafary MELotfyH, et al.Shared decision-making aid for juvenile idiopathic arthritis: Moving from informative patient education to interactive critical thinking. Clin Rheumatol. 2019;38(11):3217‐3225. doi:https://doi.org/10.1007/s10067-019-04687-y
32.
TurkdoganSRoyCFChartierG, et al.Effect of perioperative patient education via animated videos in patients undergoing head and neck surgery: A randomized clinical trial. JAMA Otolaryngol-- Head Neck Surg. 2022;148(2):173‐179. doi:https://doi.org/10.1001/jamaoto.2021.3765
33.
KutnerMGreenbergEJinYPaulsenC. The health literacy of America’s adults: Results from the 2003 national assessment of adult literacy. US Dep Educ. 2003;2006(483):76.
34.
BraithwaiteTWiegerinckNPetzoldADennistonA. Vision loss from atypical optic neuritis: Patient and physician perspectives. Ophthalmol Ther. 2020;9(2):215‐220. doi:https://doi.org/10.1007/s40123-020-00247-9
35.
AthanasiadisDIRoperAHilgendorfW, et al.Facebook Groups provide effective social support to patients after bariatric surgery. Surg Endosc. 2021;35(8):4595‐4601. doi:https://doi.org/10.1007/s00464-020-07884-y
PapadakosJSamoilDGiannopoulosE, et al.The cost of patient education materials development: Opportunities to identify value and priorities. J Cancer Educ Off J Am Assoc Cancer Educ. 2022;37(3):834‐842. doi:https://doi.org/10.1007/s13187-020-01893-0
39.
SorrentinoCBergerAMWardianSPattrinLM. Using the intranet to deliver patient-education materials. Clin J Oncol Nurs. 2002;6(6):354‐357. doi:https://doi.org/10.1188/02.CJON.354-357
40.
KingCHornbyS. Access for all? A survey of health librarians in the north-west of England on provision of information to patients. Health Inf Libr J. 2003;20(4):205‐214. doi:https://doi.org/10.1111/j.1471-1842.2003.00462.x
41.
AngraalSCaraballoCKahnP, et al.Geographical affiliation with top 10 NIH-funded academic medical centers and differences between mortality from cardiovascular disease and cancer. Am Heart J. 2020;230:54‐58. doi:https://doi.org/10.1016/j.ahj.2020.08.014
42.
CoileRCJ. E-health: Reinventing healthcare in the information age. J Healthc Manag Am Coll Healthc Exec. 2000;45(3):206‐210.
WenKYKrepsGZhuFMillerS. Consumers’ perceptions about and use of the internet for personal health records and health information exchange: Analysis of the 2007 health information national trends survey. J Med Internet Res. 2010;12(4):e73. doi:https://doi.org/10.2196/jmir.1668
45.
SheeranLMilneDHolmesMTidharGArandaS. Developing a patient-led cancer care website, ‘CanCare’: What do end users want?J Res Nurs. 2012;17(6):519‐535. doi:https://doi.org/10.1177/1744987112460389
46.
DayucosAFrenchLAKelemenALiangYSik LanyiC. Creation and Evaluation of a Preoperative Education Website for Hip and Knee Replacement Patients-A Pilot Study. Med Kaunas Lith. 2019;55(2). doi:https://doi.org/10.3390/medicina55020032
47.
HeikkinenKSuomiRJääskeläinenMKaljonenALeino-KilpiHSalanteräS. The creation and evaluation of an ambulatory orthopedic surgical patient education web site to support empowerment. Comput Inform Nurs CIN. 2010;28(5):282‐290. doi:https://doi.org/10.1097/NCN.0b013e3181ec23e6
48.
RevereLRobinsonLJ. How healthcare organizations use the internet to market quality achievements. J Healthc Manag Am Coll Healthc Exec. 2010;55(1):39‐49. discussion 49-50.
