Evaluate the effectiveness of a digital home monitoring program for infants with cleft palate with or without cleft lip (CP ± L), compared to monitoring through in-person clinic visits.
Design
Retrospective cohort study.
Setting
One metropolitan pediatric hospital.
Patients
Eight-eight infants with CP ± L: 41 infants received digital home monitoring and 47 infants were monitored solely through in-person visits.
Interventions
Beginning in September 2022, all infants with CP ± L were enrolled in a digital home monitoring program, in which caregivers weighed their child weekly at home and submitted those weights, along with subjective evaluations of their child's feeding, using a secure website. Submissions were monitored by the cleft team nurse coordinator.
Main Outcome Measures
The primary outcome was the incidence of malnutrition at 4 months of age. The secondary outcome was the average number of in-person clinic visits during the first 4 months of life.
Results
There was not a significant difference (P = .764) in the incidence of malnutrition between infants monitored in-person compared to infants in the home monitoring program (13% vs 17%). Infants in the home monitoring program had fewer in-person visits with speech–language pathology (5.4 vs 3.9; P < .001). Across groups, malnutrition was associated with Child Protective Services involvement (P = .001) and presence of a syndrome (P = .014).
Conclusions
The digital home monitoring program did not decrease the incidence of malnutrition, but it did reduce the number of speech–language pathology in-person visits. The program appears to distinguish infants who are gaining weight appropriately from those with feeding challenges, but it does not fully address the multifactorial contributors to malnutrition.
MaiCTIsenburgJLCanfieldMA, et al.National population-based estimates for major birth defects, 2010–2014. Birth Defects Res. 2019;111(18):1420‐1435. doi:https://doi.org/10.1002/bdr2.1589
2.
MadhounLLCrerandCEKeimSBaylisAL. Breast milk feeding practices and barriers and supports experienced by mother-infant dyads with cleft lip and/or palate. Cleft Palate Craniofac J. 2020;57(4):477‐486. doi:https://doi.org/10.1177/1055665619878972
3.
MizunoKUedaAKaniKKawamuraH. Feeding behaviour of infants with cleft lip and palate. Acta Paediatr. 2002;91(11):1227‐1232. doi:https://doi.org/10.1080/080352502320777478
4.
ReidJReillySKilpatrickN. Sucking performance of babies with cleft conditions. Cleft Palate Craniofac J. 2007;44(3):312‐320. doi:https://doi.org/10.1597/05-173
5.
BaylisALPearsonGDHallC, et al.A quality improvement initiative to improve feeding and growth of infants with cleft lip and/or palate. Cleft Palate Craniofac J. 2018;55(9):1218‐1224. doi:https://doi.org/10.1177/1055665618766058
6.
CorbettSSDrewettRF. To what extent is failure to thrive in infancy associated with poorer cognitive development? A review and meta-analysis. J Child Psychol Psychiatry. 2004;45(3):641‐654. doi:https://doi.org/10.1111/j.1469-7610.2004.00253.x
7.
HlongwaPLevinJRispelLC. Epidemiology and clinical profile of individuals with cleft lip and palate utilising specialised academic treatment centres in South Africa. PLoS One. 2019;14(5):e0215931. doi:https://doi.org/10.1371/journal.pone.0215931
8.
BessellAHooperLShawWCReillySReidJGlennyAM. Feeding interventions for growth and development in infants with cleft lip, cleft palate or cleft lip and palate. Cochrane Database Syst Rev. 2011;2011(2):CD003315. doi:https://doi.org/10.1002/14651858.CD003315.pub3
9.
KayeAThaeteKSnellAChesserCGoldakCHuffH. Initial nutritional assessment of infants with cleft lip and/or palate: Interventions and return to birth weight. Cleft Palate Craniofac J. 2017;54(2):127‐136. doi:https://doi.org/10.1597/15-163
10.
WilliamsJLLienKMKirschnerRAllenGChapmanK; Cleft Outcomes Research NETwork (CORNET) Consortium. Feeding management and palate repair timing in infants with cleft palate with and without pierre robin sequence: A multisite study. Cleft Palate Craniofac J. Published online March 15, 2024. doi:https://doi.org/10.1177/10556656241239766
11.
MarquesILNackashiJABorgoHC, et al.Longitudinal study of growth of infantren with unilateral cleft-lip palate from birth to two years of age. Cleft Palate Craniofac J. 2009;46(6):603‐609. doi:https://doi.org/10.1597/08-105.1
12.
KotlarekKJBensonMWilliamsJ. Current practice patterns and training pathways for feeding infants with cleft palate. Cleft Palate Craniofac J. 2024;61(6):1018‐1026. doi:https://doi.org/10.1177/10556656231152358
13.
SnyderMRuscelloDM. Parent perceptions of initial feeding experiences of children born with cleft palate in a rural Locale. Cleft Palate Craniofac J. 2019;56(7):908‐917. doi:https://doi.org/10.1177/1055665618820754
14.
BroderHLWilson-GendersonMSischoL. Health disparities among children with cleft. Am J Public Health. 2012;102(5):828‐830. doi:https://doi.org/10.2105/AJPH.2012.300654
15.
PandyaANBoormanJG. Failure to thrive in babies with cleft lip and palate. Br J Plast Surg. 2001;54(6):471‐475. doi:https://doi.org/10.1054/bjps.2001.3618
16.
CinarSKocG. The effect of nursing care provided to Turkish mothers of infants born with cleft lip and palate on maternal attachment and self-efficacy: A quasi-experimental study. J Pediatr Nurs. 2020;53:e80‐e86. doi:https://doi.org/10.1016/j.pedn.2020.02.032
17.
SantoliJMLindleyMCDeSilvaMB, et al.Effects of the COVID-19 pandemic on routine pediatric vaccine ordering and administration—United States, 2020. MMWR Morb Mortal Wkly Rep. 2020;69(19):591‐593. doi:https://doi.org/10.15585/mmwr.mm6919e2
18.
Grummer-StrawnLMReinoldCKrebsNF. Centers for disease control and prevention (CDC). Use of World Health Organization and CDC growth charts for children aged 0-59 months in the United States [published correction appears in MMWR Recomm Rep. 2010 Sep 17;59(36):1184]. MMWR Recomm Rep. 2010;59(RR-9):1‐15.
19.
MartinJAOstermanMJKirmeyerSEGregoryEC. Measuring gestational age in vital statistics data: Transitioning to the obstetric estimate. Natl Vital Stat Rep. 2015;64(5):1.
20.
Guideline: Assessing and managing children at primary health-care facilities to prevent overweight and obesity in the context of the double burden of malnutrition: Updates for the integrated management of childhood illness (IMCI). Geneva: World Health Organization; 2017. Table 1, World Health Organization (WHO) classification of nutritional status of infants and children. https://www.ncbi.nlm.nih.gov/books/NBK487900/table/fm
21.
BlockRWKrebsNF; American Academy of Pediatrics Committee on Child Abuse and Neglect; American Academy of Pediatrics Committee on Nutrition. Failure to thrive as a manifestation of child neglect. Pediatrics. 2005;116(5):1234‐1237. doi:https://doi.org/10.1542/peds.2005-2032
22.
McKinneyCMBijlaniKFainoA, et al.A cross-sectional study of the nutritional status of infants with orofacial clefts in the first 6 months of life. J Pediatr. 2023;255:181‐189.e3. doi:https://doi.org/10.1016/j.jpeds.2022.11.030
23.
WHO Multicentre Growth Reference Study Group. WHO Child Growth Standards based on length/height, weight and age. Acta Paediatr Suppl. 2006;95:76‐85. doi:https://doi.org/10.1111/j.1651-2227.2006.tb02378.x
KendrickDElkanRHewittM, et al.Does home visiting improve parenting and the quality of the home environment? A systematic review and meta analysis. Arch Dis Child. 2000;82(6):443‐451. doi:https://doi.org/10.1136/adc.82.6.443
26.
BinglerMEricksonLAReidKJ, et al.Interstage outcomes in infants with single ventricle heart disease comparing home monitoring technology to three-ring binder documentation: A randomized crossover study. World J Pediatr Congenit Heart Surg. 2018;9(3):305‐314. doi:https://doi.org/10.1177/2150135118762401
27.
PrezelskiKVillarreal AchaDNgoTC, et al.A dedicated multidisciplinary growth and feeding clinic for infants with cleft lip and/or palate demonstrates need for intervention. Cleft Palate Craniofac J. 2024:10556656241258687. doi:https://doi.org/10.1177/10556656241258687
28.
TarquinioDCJonesMCJonesKLBirdLM. Growth charts for 22q11 deletion syndrome. Am J Med Genet A. 2012;158A(11):2672‐2681. doi:https://doi.org/10.1002/ajmg.a.35485
29.
CabanasCCFalconiSJonesHSubhaniMAdesanyaOA. Cleft palate in a newborn with trisomy 21: A case report. Cureus. 2023;15(5):e39107. doi:https://doi.org/10.7759/cureus.39107
KasatwarABorleRBholaNRajanikanthKPrasadGSVJadhavA. Prevalence of congenital cardiac anomalies in patients with cleft lip and palate—its implications in surgical management. J Oral Biol Craniofac Res. 2018;8(3):241‐244. doi:https://doi.org/10.1016/j.jobcr.2017.09.009
