Evaluate predictors for attendance and adherence to speech evaluations and determine factors that influence longitudinal care for patients with cleft palate and craniofacial differences.
Design
Retrospective, observational cohort study.
Setting
Tertiary children’s hospital.
Participants
Eight hundred and eighty newborns receiving care between 2014 and 2022 were included in the study sample for longitudinal assessment of appointment adherence. Participants were included if they had a cleft-related diagnosis, were scheduled for an initial speech evaluation between 1 and 3 years old, were scheduled for follow-up speech evaluations between 3 and 6 years old, and had demographic, diagnostic, and clinical data in their charts.
Main Outcome Measures:
Variables of interest included demographic data, diagnostic criteria, insurance data, distance to clinic, speech/resonance characteristics, hard/soft palate integrity, and surgical data. Chi-square analyses, independent sample t-tests, and descriptive statistics were conducted to identify characteristics of those who attended appointments and those who did not. Logistic regression analyses were conducted to examine factors predictive of appointment adherence over time.
Results
A total of 66.9% of patients attended the initial speech evaluation. A total of 50.6% of participants adhered to follow-up appointments. Distance to clinic (P = .018), insurance type (P < .001), and cleft type (P < .001) influenced initial speech evaluation attendance. For follow-up appointment adherence, cleft type (P < .001) was the strongest predictor pre-pandemic, while severity of velopharyngeal function (P = .037) strongly predicted adherence during the pandemic.
Conclusion
Appointment adherence is multifactorial and driven by geographic, demographic, and clinical variables. Identifying barriers to care may improve appointment adherence for those with speech/resonance needs and prevent patients from being lost to follow-up.
AustinAADruschelCMTylerMCRomittiPAWestIIDamianoPCRobbinsJMBurnettW. Interdisciplinary craniofacial teams compared with individual providers: Is orofacial cleft care more comprehensive and do parents perceive better outcomes?Cleft Palate Craniofac J. 2010;47(1):1-8. doi:https://doi.org/10.1597/08-250.1
3.
American Cleft Palate-Craniofacial Association. Parameters for the evaluation and treatment of patients with cleft lip/palate or other craniofacial anomalies. Cleft Palate- Craniofac J. 1993;30(Suppl 1):143-153.
4.
ByrnesYMMillerSPFrankKHoffmanRLKauffmanCA. Exploring delay to follow-up in a rural multidisciplinary cleft clinic. Ann Plast Surg.2023;90(6S):S612-S616. doi:https://doi.org/10.1097/SAP.0000000000003443
5.
Hardin-JonesMAChapmanKL. The implications of nasal substitutions in the early phonology of toddlers with repaired cleft palate. Cleft Palate Craniofac J. 2018;55(9):1258-1266. doi:https://doi.org/10.1177/1055665618767421
ShawWCBrattströmVMølstedKPrahl-AndersenBRobertsCTSembG. The Eurocleft study: Intercenter study of treatment outcome in patients with complete cleft lip and palate. Cleft Palate Craniofac J.2005;42(1):93-98. doi:https://doi.org/10.1597/02-119.5.1
8.
PeckCJParsaeiYLattanziJGowdaAUYangJLopezJSteinbacherDM. The geographic availability of certified cleft care in the United States: A national geospatial analysis of 1-hour access to care. J Oral Maxillofac Surg.2021;79(8):1733-1742. https://doi.org/10.1016/j.joms.2021.02.043
9.
Van SwolJWolfBJToumeyJPechaPPatelKG. Follow-up care barriers for patients with orofacial clefts. Cleft Palate Craniofac J.2022;59(10):1213-1221. https://doi.org/10.1177/10556656211042162
10.
SmillieIYongKHarrisKWynneDRussellC. Socioeconomic influence on orofacial cleft patient care. Scott Med J.2015;60(2):70-74. doi:https://doi.org/10.1177/0036933014564133
11.
DaviesAJVHumphriesKLewisSJHoKSandyJRWrenY. The Cleft Collective: Protocol for a longitudinal prospective cohort study. BMJ Open. 2024;14(7):e084737-e084737. https://doi.org/10.1136/bmjopen-2024-084737
12.
LynnJVRanganathanKBagerisMHHart-JohnsonTBuchmanSRBlackwoodRA. Sociodemographic predictors of missed appointments among patients with cleft lip and palate. Cleft Palate Craniofac J. 2018;55(10):1440-1446. doi:https://doi.org/10.1177/1055665618764739
13.
CooperDCPetersonECGrellnerCGNaidooSDSkolnickGBPfeifaufKDSmythMDSnyder-WarwickAKPatelKB. Cleft and Craniofacial Multidisciplinary Team Clinic: A look at attrition rates for patients with complete cleft lip and palate and nonsyndromic single-suture craniosynostosis. Cleft Palate Craniofac J. 2019;56(10):1287-1294. doi:https://doi.org/10.1177/1055665619856245
14.
SohnH. Racial and ethnic disparities in health insurance coverage: Dynamics of gaining and losing coverage over the life-course. Popul Res Policy Rev. 2017;36(2):181-201. doi:https://doi.org/10.1007/s11113-016-9416-y
15.
KasperJDGiovanniniTAHoffmanC. Gaining and losing health insurance: Strengthening the evidence for effects on access to care and health outcomes. Med Care Res Rev.2000;57(3):298-318. doi:https://doi.org/10.1177/107755870005700302
16.
CassellCHKrohmerAMendezDDLeeKAStraussRPMeyerRE. Factors associated with distance and time traveled to cleft and craniofacial care. Birth Defects Res A Clin Mol Teratol. 2013;97(10):685-695. doi:https://doi.org/10.1002/bdra.23173
17.
National Academies of Sciences, Engineering, and Medicine. Factors that affect health-care utilization. Health-care utilization as a proxy in disability determination. The National Academies Press; 2018. Accessed October 10, 2024. https://www.ncbi.nlm.nih.gov/books/NBK500097/
18.
RoddHDClarkELSternMRBakerSR. Failed attendances at hospital dental clinics among young patients with cleft lip and palate. Cleft Palate Craniofac J. 2007;44(1):92-94. doi:https://doi.org/10.1597/05-162
19.
HeronMJRezwanSKZhuKJGornitskyJRedettRJYangR. A geospatial analysis of barriers to cleft lip and palate care in the United States. Cleft Palate Craniofac J. 2024:1-11. doi:https://doi.org/10.1177/10556656241259883
20.
PhilpJEllisPKSchererNJLienKM. Enhanced milieu teaching with phonological emphasis: A pilot telepractice parent training study for toddlers with clefts. Children (Basel).2021;8(9):736. doi:https://doi.org/10.3390/children8090736
21.
SellDO’RourkeCSweeneyT. Parent experiences of undertaking therapy for cleft palate speech disorders following in-depth training. Perspect ASHA Spec Interest Groups. 2023;8(5):965-985. doi:https://doi.org/10.1044/2023_persp-22-00253
22.
MullenMCYanFFordMEPatelKGPechaPP. Racial and ethnic disparities in primary cleft lip and cleft palate repair. Cleft Palate Craniofac J. 2023;60(4):482-488. doi:https://doi.org/10.1177/10556656211069828
23.
BuchmuellerTCLevyHG. The ACA’s impact on racial and ethnic disparities in health insurance coverage and access to care. Health Aff.2020;39(3):395-402. doi:https://doi.org/10.1377/hlthaff.2019.01394
24.
WangTFShiLNieXZhuJ. Race/ethnicity, insurance, income and access to care: The influence of health status. Int J Equity Health.2013;12(29):1-7. doi:https://doi.org/10.1186/1475-9276-12-29
25.
CostaBMcWilliamsDBligheSHudsonNHottonMSwanMCStockNM. Isolation, uncertainty and treatment delays: Parents’ experiences of having a baby with cleft lip/palate during the COVID-19 pandemic. Cleft Palate Craniofac J. 2023;60(1):82-92. doi:https://doi.org/10.1177/10556656211055006
26.
WiefelsMDGmunderKNRuizJW. Patient income level and health insurance correlate with differences in health care utilization during the COVID-19 pandemic. J Public Health Res.2023;12(1):1-8. doi:https://doi.org/10.1177/22799036231160624
27.
ShamiETabriziJSNosratnejadS. The effect of health insurance on the utilization of health services: A systematic review and meta-analysis. Galen Med J. 2019;8(e1411):1-8. doi:https://doi.org/10.31661/gmj.v8i0.1411
VillavisanisDFWagnerCSMoralesCZSmithTEBlumJDChoDYBartlettSPTaylorJASwansonJW. Geospatial and socioeconomic factors interact to predict management and outcomes in cleft lip and palate surgery: A single institution study of 740 patients. Cleft Palate Craniofac J. 2024;61(6):921-929. doi:https://doi.org/10.1177/10556656221150291
30.
SahooARSingh DheerSMaheshPCGoyalPSidhuRDeepalakshmiS. A questionnaire study to assess patients with cleft lip and palate for their oral health-related quality of life. Cureus. 2023;15(5):e38712. doi:https://doi.org/10.7759/cureus.38712
31.
SkirkoJRWeaverEMPerkinsJAKinterSEblenLSieKC. Validity and responsiveness of VELO: A velopharyngeal insufficiency quality of life measure. Otolaryngol Head Neck Surg. 2013;149(2):304-311. doi:https://doi.org/10.1177/0194599813486081
32.
WehbyGLNaderiHRobbinsJMAnsleyTNDamianoPC. Comparing the visual analogue scale and the pediatric quality of life inventory for measuring health-related quality of life in children with oral clefts. Int J Environ Res Public Health.2014;11(4):4280-4291. https://doi.org/10.3390/ijerph110404280
33.
EcksteinDAWuRLAkinbiyiTSilverLTaubPJ. Measuring quality of life in cleft lip and palate patients: Currently available patient-reported outcomes measures. Plast Reconstr Surg. 2011;128(5):518e-526e. doi:https://doi.org/10.1097/PRS.0b013e31822b6a67
34.
KlassenAFTsangarisEForrestCRWongKWYPusicALCanoSJSyedIDuaMKainthSJohnsonJ, et al.Quality of life of children treated for cleft lip and/or palate: A systematic review. J Plast Reconstr Aesthet Surg.2012;65(5):547-557. doi:https://doi.org/10.1016/j.bjps.2011.11.004
35.
Raposo-do-AmaralCKuczynskiEAlonsoN. Quality of life among children with cleft lips and palates: A critical review of measurement instruments. Revista Brasileira de Cirurgia Plástica. 2011;26(4):639-644. doi:https://doi.org/10.1590/S1983-51752011000400017
36.
Queiroz HerkrathAPHerkrathFJRebeloMAVettoreMV. Measurement of health-related and oral health-related quality of life among individuals with nonsyndromic orofacial clefts: A systematic review and meta-analysis. Cleft Palate Craniofac J. 2015;52(2):157-172. doi:https://doi.org/10.1597/13-104
