Abstract
Objective:
To assess the relationship between neighborhood-level social disadvantage, as measured by Area Deprivation Index (ADI) and Childhood Opportunity Index (COI), and postoperative outcomes and follow-up care after primary or secondary cleft lip repair.
Design:
Retrospective cohort study.
Setting:
Single academic tertiary care center.
Patients, Participants:
A total of 171 pediatric patients (<18 years of age) with cleft lip with or without cleft palate (CL±P) who underwent primary or secondary cheiloplasty from 2013–2022.
Interventions:
Neighborhood deprivation was assessed during treatment using two composite measures of relative socioeconomic disadvantage, the ADI and the COI.
Main Outcome Measures:
Postoperative outcomes and clinic follow-up adherence.
Results:
Among the 171 total patients, there was only a moderate correlation between patients’ ADI and COI quintiles (R2=0.552, p<0.001). Among all patients, ADI and COI were found to be associated with significant delay in follow-up and public insurance type was found to be associated with increased loss to follow-up. Patients with public insurance undergoing primary and secondary repair were more likely to have postoperative no-show appointments and have younger age at time of procedure. Neither ADI or COI correlated with surgical complications nor hospital readmission within 30 days for primary or secondary repair patients.
Conclusions:
Neighborhood-level social disadvantage indices were associated with delays in postoperative follow-up but were not associated with short-term surgical complications or readmissions following cleft lip repair. These indices may help identify patients who could benefit from targeted outreach and care coordination to improve follow-up adherence.
Keywords: Cleft lip, social deprivation, neighborhood disadvantage, Area Deprivation Index, Child Opportunity Index, primary cheiloplasty, secondary cheiloplasty
Introduction
Cleft lip (CL) is one of the most common craniofacial anomalies with an incidence in the United States of about 1 in 1,000 live births.1 Management by a multidisciplinary team is the standard of care for these patients as they often face challenges related to feeding, speech, nasal breathing, scarring, and facial asymmetry. Importantly, feeding and speech difficulties are most pronounced in patients with cleft palate involvement, whereas patients with isolated cleft lip more commonly experience challenges related to nasal form, function, and appearance.2 Multidisciplinary teams coordinate surgical and therapeutic interventions and longitudinal follow-up. Optimal follow-up is important, as delays in care often portend worse functional and aesthetic outcomes.3 Ideal timing for primary CL repair has yet to be objectively validated, however, lip repair is commonly performed between 3–6 months of age to balance safety with early reconstruction.4
Previous studies have shown that patients who experience delays in cleft care are more likely to be from historically marginalized populations or socioeconomically disadvantaged areas. These patients have a higher likelihood of experiencing financial constraints, geographic isolation, or logistical barriers and are thus especially vulnerable to suboptimal outcomes associated with delays in care.3,5 Despite growing literature on the effects of social determinants and their impact on patients with cleft lip, there continues to be persistent heterogeneity in timing and quality of care leading to poorer outcomes related to race, insurance status, and distance to surgical centers.3,5 These individual variables are important to identify and characterize but may fall short on capturing the broader socioeconomic context in which these patients and their families live, thus failing to indicate the most significant targets of intervention.
This limitation may be addressed using geospatially linked measures of neighborhood disadvantage such as the Area Deprivation Index (ADI) and Child Opportunity Index (COI) to provide a more comprehensive assessment of the disparities faced by these vulnerable populations. The ADI is a validated tool comprising 17 variables relating to education, employment, housing-quality, and poverty measures derived from census data.6 Similarly, the COI has 29 included variables including data not reported by the ADI relating to factors that may affect child development such as early childhood education, environmental toxic exposures, and access to nutritious food.7 Employment of the ADI is common in studies investigating clinical risk adjustment while the COI is frequently used in pediatric health equity research and child-focused interventions.7–10 Comparison of the components within each assessment tool is shown in Figure 1.
Figure 1. Comparison of Area Deprivation Index (ADI) and Childhood Opportunity Index (COI).

The ADI measures neighborhood socioeconomic disadvantage at the census block group based on 17 predictors including education, income and housing, with higher scores indicating greater deprivation. The COI assesses the quality of environments for child development, including education, healthcare, and social resources. ADI and COI provide complementary insights into socioeconomic neighborhood level conditions and their impact on health and development in patients with cleft lip.
The purpose of this study is to evaluate whether neighborhood-level disadvantage as measured by ADI and COI is associated with delay to initial surgical intervention, postoperative complications, follow-up adherence, and readmission rates following cleft lip repair. We also examined associations stratified by stage of surgery and insurance type.
This study was conducted at the [details omitted for double-anonymized peer review], a tertiary academic referral center primarily serving patients from throughout the state of [details omitted for double-anonymized peer review] in addition to [details omitted for double-anonymized peer review]. For this study, patients from neighboring states were excluded to ensure accurate assignment of neighborhood-level disadvantage metrics as both ADI and COI were assigned using state-specific geographic data.
Patients with cleft lip are typically referred shortly after birth through our institution’s established referral network. The [details omitted for double-anonymized peer review] serves as a tertiary referral center for patients throughout [details omitted for double-anonymized peer review], receiving referrals from maternal-fetal medicine providers, community and regional hospitals, pediatricians, neonatologists, and primary care providers. Prenatal consultations are offered when orofacial clefting is identified before birth, and medically complex patients are frequently referred through our Level IV neonatal intensive care unit. Our dedicated care coordination facilitates timely clinic evaluation, feeding support, surgical planning, and longitudinal follow-up.
Patients are generally evaluated within the first one to two weeks of life and are followed longitudinally through a multidisciplinary cleft team including plastic surgery, speech-language pathology, audiology, dentistry, orthodontics, nursing, social work, and care coordination services. Care is coordinated through a centralized cleft clinic with weekly multidisciplinary team visits, supplemented by dedicated plastic surgery clinics staffed by attending surgeons once per week and advanced practice providers four days per week to improve access to care. Following each multidisciplinary clinic visit, a written summary of recommendations is provided to the patient’s primary care provider to facilitate communication and continuity of care.
Primary cleft lip repair is generally performed between 3 and 5 months of age in accordance with institutional practice patterns. Secondary procedures are individualized based on patient needs, facial growth, surgeon assessment, and family preferences. During the study period, one of the four surgeons within our practice routinely performed staged tip rhinoplasty at approximately 4 to 6 years of age rather than at the time of primary repair. Consequently, a subset of secondary procedures in this study represented planned staged interventions rather than revisions performed solely in response to functional concerns. This surgeon-specific practice pattern does not represent the current standard approach at our institution.
Methods
Study Design and Patient Population
This study was approved as exempt from full review by the [details omitted for double-anonymized peer review]’s institutional review board. A retrospective chart review of pediatric patients (<18 years of age) with cleft lip undergoing primary or secondary repair at [details omitted for double-anonymized peer review] during a ten-year period from January 2013 to December 2022 was performed. Patients were identified using Current Procedural Terminology® (CPT®) and International Classification of Diseases, 10th revision (ICD-10) codes (Supplementary Table 1). Patients with traumatic cleft etiology, a history of adoption, or a residential address outside the state of [details omitted for double-anonymized peer review] during treatment were excluded.
Demographic and Clinical Data
Patient demographics and characteristics including sex, race, ethnicity, medical insurance type, cleft characteristics, and age and weight percentile at the time of surgery were abstracted from patient electronic medical records. Postoperative outcomes were also abstracted such as opioid and antibiotic prescriptions at discharge, NSAID and/or acetaminophen use, emergency department return or hospital readmission within 30 days postoperatively, and development of complications. Complications of interest included wound breakdown/dehiscence, infection, hematoma, and feeding difficulties. Delay in postsurgical follow-up was assessed by ascertaining the total number of no-show or cancelled clinic appointments over a period of one year following initial surgery. Weight percentiles also were trended during this same period. Patients with a documented change in zip code during the post-operative window were excluded from analysis.
Neighborhood-Level Disadvantage Measures
Neighborhood deprivation was assessed at the U.S. census block group level based on the patient’s 9-digit zip code or full residential address during treatment using two composite measures of relative socioeconomic disadvantage, the Area Deprivation Index (ADI) and the Childhood Opportunity Index (COI). The University of Wisconsin’s Neighborhood Atlas® was used to ascertain each patient’s state ADI quintile, with quintile 1 corresponding to the least disadvantaged neighborhoods and quintile 5 corresponding to the most disadvantaged neighborhoods.11,12 Similarly, the Child Opportunity Index Interactive Map was used to ascertain each patient’s state COI quintile.13 To facilitate ready comparison with ADI quintiles, we transformed COI quintile scores to align with quintile 1 as the least disadvantaged and quintile 5 as the most disadvantaged.
Statistical Analysis
Statistical analysis was conducted utilizing JASP Statistics (Version 0.19.3, JASP Team) and R (Version 4.4.2). Multivariate logistic and linear regressions were conducted for binary and continuous variables respectively utilizing independent covariates of ADI, COI, and insurance type. Linear and logistic regression results were reported as estimates with p-values and 95% confidence intervals for significant results. Pearson’s correlation was used to compare ADI and COI quintiles within our patient cohort. Statistical significance was set a priori at a level of α=0.05.
Results
Overall Patient Characteristics
Patient Population
During the study interval, 171 patients with either isolated cleft lip (28.7%, n=49) or cleft lip and palate (71.3%, n=122) were identified as meeting inclusion criteria (Table 1). The majority of patients were non-syndromic (91.8%, n=148) and male (69%, n=118). Patients were most commonly White (83.0%, n=142) and not Hispanic/Latino (86.5%, n=148). The racial and ethnic distribution of the patient cohort reflects that of the state of [details omitted for double-anonymized peer review]. Patients were more likely to have commercial insurance (63.2%, n=108) than Medicaid (33.9%, n=58) or self-pay (2.9%, n=5). Analysis of the relationship between patients’ ADI and COI quintile scores using Pearson correlation revealed only a moderate correlation (R2=0.552, p<0.001) between these two indices, (Figure 2).
Table 1.
Patient demographics and characteristics (n=171).
| ADI and COI Quintiles | |
|---|---|
| Sex | 118 Male; 53 Female |
| Race | 142 White; 8 Black; 10 Asian; 6 Native American; 5 Decline to Answer |
| Ethnicity | 22 Hispanic/Latino; 148 Not Hispanic/Latino; 1 Decline to Answer |
| Insurance | 108 Private/Community Insurance; 58 Medicaid; 5 Self Pay |
| Syndromic Status | 14 Syndromic; 157 Non-Syndromic |
| Cleft Lip vs. Cleft Lip and Palate | 49 Cleft Lip; 122 Cleft Lip and Palate |
Figure 2. Comparison and correlation of ADI and COI quintile scores in study participants (n=171).

Pearson’s Correlation determined moderate positive association between study participants. *p<0.05, **p<0.01, ***p<0.001.
Weight Percentiles
In reference to isolated CL, CLP was not found to predict significantly lower weight percentiles at birth (p=0.173), but was found to be significantly correlated with lower weight percentiles at 1 month (p<0.001), 3 months (p<0.001), 6 months (p<0.007), 12 months (p<0.001), and 18 months (p<0.035) of age (Supplementary Table 1). Further, CLP was found to be predictive of lower weight percentile at procedure (p=0.011) when compared to CL only (Supplementary Table 2). ADI, COI, and insurance status were not found to be significantly correlated with lower weight percentiles at birth or any later stages of development.
Primary Cheiloplasty
In patients undergoing primary cheiloplasty (n=100), the average age at the time of procedure was 0.25 years. Male sex was found to significantly correlate with earlier age at time of procedure (−0.247, 95% CI: −0.893 – 0.400, p=0.039) (Supplementary Table 3). Eleven complications were reported including incision breakdown/dehiscence (n=6), infection (n=2), and feeding difficulties (n=3). Two patients required unexpected readmission within 30 days following the procedure including exacerbation of chronic otitis media requiring myringotomy/tube placement in a medically complex child (n=1), and breathing concern without active bleeding (n=1). Medicaid insurance status was found to be significantly correlated with an increased total number of postoperative no-show appointments (0.221, 95% CI: 0.052–0.391, p=0.011) (Figure 3). Neighborhood disadvantage indexed by ADI and COI were not found to be significantly associated with older age at procedure, total number of no-show clinic appointments, cancelled clinic appointments, readmission, or postoperative complications.
Figure 3. Overall Participant Characteristics.


a) Higher neighborhood disadvantage as indexed by ADI reveals higher rates of delay in follow-up in their post-operative cleft lip care. b) Higher COI indicates significantly higher rates of delay in follow-up in their post-operative cleft care. c) Insurance type was significantly associated with higher loss to follow ups. *p<0.05, **p<0.01, ***p<0.001.
Secondary Cheiloplasty
Among patients undergoing secondary cheiloplasty (n=81), 75.3% (n=61) were planned as a staged protocol with tip rhinoplasty. The average age at the time of procedure was 6.01 years. Notably, one surgeon’s practice included performing tip rhinoplasty as part of a planned surgery at school age, rather than primary rhinoplasty with initial cleft lip repair. Four instances of complications were reported including incision breakdown/dehiscence (n=3), and feeding difficulties (n=1). No patients required readmission within 30 days following the procedure. Greater COI neighborhood disadvantage was significantly correlated with total number of cancelled clinic appointments (0.251, 95% CI: 0.009–0.494, p=0.043) (Figure 4a). Medicaid insurance was significantly associated with total number of no-show appointments (0.193, 95% CI: 0.047–0.339, p=0.010) and younger age at procedure when compared to patients with private insurance (−2.926, 95% CI: −5.043- −0.803, p=0.007) (Figure 4b-c). Male sex was found to be associated with use of antibiotic prescription (−1.407, 95% CI: −2.440 – −0.374, p=0.008) and younger age at time of procedure (−1.998, 95% CI: −3.988 – −0.008, p=0.049), (Supplementary Table 4). CLP was not found to be correlated to any revision post-operative factors, surgical care adherence, nor patient characteristics at date of surgery when compared to CL only.
Figure 4. Cleft lip primary.

ADI and COI did not show any significant associations with primary lip repair post-operative outcomes and follow-up adherence. Medicaid insurance revealed significant associated with increased number of no show appointments in patients with Medicaid when compared to that of patients with private insurance. *p<0.05, **p<0.01, ***p<0.001.
Follow-Up Care
Among all patients, significant correlation was found between significant delay in follow-up care with both greater ADI neighborhood deprivation (0.0426, 95% CI: 0.110 – 0.742, p=0.008) (Figure 5a), and greater COI disadvantage (0.611, 95% CI: 0.227–0.995, p=0.002) (Figure 5b). Patients with public insurance were more likely to be lost to follow-up than patients with private insurance (−1.194, 95% CI: −2.386- −0.003, p=0.049).
Figure 5. Cleft lip revision post-operative outcomes and follow-up adherence.

When assessing COI, we found that higher COI disadvantage was significantly correlated with a) increased number of follow up cancelled appointments. Medicaid insurance is significantly associated with b) total number of no show appointments and c) younger age at procedure when compared to patients with private insurance. *p<0.05, **p<0.01, ***p<0.001.
Discussion
In a single tertiary care center study, we investigated the association of neighborhood-level disadvantage as indexed by the Area Deprivation Index and the Childhood Opportunity Index with weight percentiles, age at time of procedure, surgical outcomes, and follow-up adherence in pediatric patients undergoing cleft lip procedures. Analyses were performed for the entire cohort as well as stratified by procedure type (primary cheiloplasty and secondary cheiloplasty) to elucidate how neighborhood- and insurance-based disadvantage may shape access to and outcomes of cleft lip care across varying stages of treatment.
We chose to expand our assessment of inequity beyond single variable metrics to create a comprehensive picture of the socio-economic disadvantage affecting patients. Inclusion of both ADI and COI was intentional as they incorporate few overlapping variables (high school graduation rates, median household income, unemployment) but differ in others. Variables included in COI focus on impactful factors relating to child development such as early childhood education and social resources. In contrast, ADI contributors focus on the environment of built infrastructure such as presence of plumbing in housing units and median monthly mortgage or rent.
Importantly, we found only a moderate correlation among our overall patient cohort between their ADI and COI quintiles (R2=0.552, p<0.001). This finding underscores that inequity is multidimensional and should be treated as such when identifying actionable targets for intervention.
Growth and Nutrition
This study did not demonstrate associations between socio-economic disadvantage and impaired growth in patients with clefts. Weight percentiles from birth to 24 months of age were not predicted by greater neighborhood-level disadvantage nor Medicaid insurance status. This study showed a significant association between lower weight percentile and CLP as compared to isolated CL, consistent with previous reports. This pattern likely reflects the significant impact palatal involvement has on feeding and swallowing, whereas children with isolated CL are able to establish near-normal feeding habits at an earlier age. Supporting this interpretation, a previous report focusing only on patients with CP+/-L has shown a significant association between lower weight percentiles and Medicaid insurance status.7 Moreover, our institution’s multidisciplinary clinic provides longitudinal feeding support to patients with weekly weight checks and nursing-led feeding interventions which may have further mitigated the potential influence of socioeconomic disadvantage on growth outcomes in this cohort.
Timing of Surgery
Our findings regarding timing of primary cheiloplasty demonstrate the multifaceted nature of socioeconomic disadvantage as measured by differing metrics. In patients undergoing primary cheiloplasty, low socioeconomic status as proxied by high ADI and COI quintiles were not found to be predictive of delay to primary cheiloplasty.
Interestingly, Medicaid insurance was found to be significantly associated with younger age at time of primary repair contrary to prior reports.14,15 These findings must be interpreted within the context of real-world clinical practice in which there are multiple protective factors meant to ensure timely primary lip repair. Firstly, the standardized timing of primary cheiloplasty is relatively early in the continuum of cleft care regardless of payer type. This differs from later procedures such as palatoplasty or alveolar bone grafting which occur years later and have been shown to be more vulnerable to the effects of socio-economic disadvantage.16,17 In addition, robust referral systems in place within our hospital system facilitate early identification of patients with clefts and prompt direction to our multidisciplinary clinic within the first days to weeks of life. Together, these findings likely highlight the effectiveness of institutional support reducing structural barriers and our coordinated cleft care system rather than an advantage of Medicaid itself.
Timing of secondary CL revision surgery was not found to be influenced by socioeconomic disadvantage related to ADI, COI, or Medicaid insurance status. Unlike primary repair surgery, secondary revision surgeries are often planned within the longitudinal care framework and are no longer dependent on patient-initiated surgery scheduling. Decision-making regarding the timing of secondary revision surgery is more likely to be dependent on facial growth, scar maturation, and individual and surgeon factors, potentially mitigating the effects of socioeconomic barriers. Furthermore, the analytic cohort may be affected by selection bias for patients who ultimately underwent secondary surgery, potentially excluding individuals who faced barriers sufficient to preclude them from revision altogether.
Surgical Outcomes
Neighborhood-level socioeconomic disadvantage as measured by COI and ADI was not associated with postoperative complications nor hospital readmission following either primary or secondary cleft lip repair. This absence of an observed association to perioperative complications and readmissions may reflect limitations inherent to both the outcome measure and the indices themselves. Postoperative complications are relatively infrequent following cleft lip repair, limiting statistical power to detect small to modest socioeconomic effects. Additionally, patients who undergo cleft lip repair, especially those presenting for secondary repair, have already successfully navigated multiple access points within the healthcare system, potentially introducing selection bias within the operative population.
Moreover, primary cleft lip repair represents a highly standardized, time-sensitive surgical intervention which may limit variability in operative care. This coupled with our multidisciplinary clinic’s uniform perioperative protocols including standardized preoperative assessment, caregiver education, and structured postoperative follow-up, may mitigate disparities that would otherwise transform into differences in short-term surgical outcomes.
Importantly, although our findings found a lack of significance between socioeconomic disadvantage and immediate postoperative complications, it is well established that socioeconomic disadvantage exerts meaningful effects on longitudinal outcomes such as speech development, dental and orthodontic care, revision burden, and care continuity.5,18 These downstream outcomes depend on sustained access over the course of many years and thus should be the target of future studies aiming to quantify the effects of indices such as COI and ADI.
Follow-up Adherence
Among all patients, COI was found to be associated with delays in follow-up with further association found within the primary cohort with increased total number of cancelled appointments. This relationship was not observed when analyzing the number of no-show appointments. The underlying mechanisms contributing to cancelled appointments are likely distinct from no-show appointments: cancellations may represent consistent and predictable barriers and no-shows may represent acute or unanticipated disruptions preventing attendance without allowing for prior notice.
Similar to COI, neighborhood-disadvantage as indexed by ADI was found to be significantly associated with delays in follow-up. In contrast, however, ADI quintile among primary repair patients was not found to be associated with an increased number of cancelled appointments or no-show appointments. This is likely due to the different dimensions captured by each socioeconomic index. COI incorporates child-focused variables such as educational resources, access to healthy food, and neighborhood opportunities that may more directly influence a family’s ability to engage with longitudinal care. In contrast, the focus of ADI on broader neighborhood-level variables rather than individual-level variables. The moderate correlation observed between ADI and COI in our cohort suggests that these indices capture related but distinct aspects of disadvantage which may explain their differing association with follow-up adherence. Further, our institution’s robust multidisciplinary clinic may attenuate the influence of neighborhood-level disadvantages on early cleft care utilization.
In both primary and revision lip repair, Medicaid insurance status was significantly associated with an increase in loss to follow-up and increased total number of no-show appointments indicating these patients may experience the most disadvantage. This is consistent with previous reports within pediatric literature consistently identifying publicly insured patients as more likely to have no-show appointments compared to their privately insured counterparts.19,20 Families on public insurance may be more susceptible to experience transportation insecurity or inflexible work schedules. These overwhelming barriers may cause patient families to be unable to attend clinical follow-up and also unable to notify the clinic in a timely manner.
Patients experiencing neighborhood-level or insurance-related disadvantage are likely to experience high costs associated with travel, lost working hours, and childcare at a higher burden. Our institution provides multidisciplinary care with access to multiple providers appointments within a single clinic visit, helping to lessen the burden of care placed on the patient in terms of travel to the hospital, time off work for the parents, childcare required for siblings, and the logistical challenges of transporting an infant to the hospital. However, we are limited by having only one clinic location which may affect patients who are geographically isolated. Although our plastic surgery department has established rural outreach clinics, we are currently unable to offer comprehensive multidisciplinary team clinic appointments there. This may be a targetable intervention to increase access to care for patients. In addition, telemedicine may offer a promising option to help alleviate some of these costs when conducting follow-up for these complex patients.
Strategies to Address Disparities in Access and Follow-up
Although structural disadvantage is multifactorial, several domains by the ADI and COI indices point to modifiable factors that can be targeted to improve cleft care. Variables represented in the ADI, such as household infrastructure, vehicle access, and neighborhood crowding, are likely to benefit from broad, system-level interventions such investment in public transit, state-level policy increasing access to affordable housing, among others aimed to reduce structural barriers. Particularly, expansion of Medicaid transportation programs from reimbursement-based models, where applicable, to voucher-based systems may better support families who are unable to afford transportation costs upfront. In these situations, reimbursement after travel may provide little practical benefit if families are unable to pay for gas or other transportation expenses in the first place.
In contrast to ADI, the child-focused domains with the COI such as access to early education, toxic exposures, and neighborhood resources, may identify patients who would benefit most from individualized interventions. For example, families from significantly disadvantaged areas as indexed by COI are likely to benefit significantly from proactive outreach by care coordinators or community health workers with early integration of social work services. This may help families anticipate and overcome barriers before they result in disrupted care, especially in limited pediatric specialty resources. Increased access to telehealth services through institutional expansion may also reduce disparities in access to these limited services.
Importantly, we also identified Medicaid-insurance status as a significant predictor of increased no-show appointments across both primary and secondary cheiloplasty. This finding demonstrates the persistent effect of insurance-based disparity and highlights the need to view this factor as an actionable target for intervention. Addressing these challenges requires comprehensive, patient-centered interventions including tailored reminder systems, flexible rescheduling options, and case management services specifically for high-risk patients in this population.
Overall, these findings emphasize the critical role of multidisciplinary cleft teams in mitigating the pervasive and long-term effects of socioeconomic disadvantage. These multidisciplinary cleft teams can promote and protect continuity of care by combining standardized surgical protocols, proactive support for socially at-risk families, and comprehensively identifying vulnerable patients prior to surgery. Strategically integrating neighborhood-level disadvantage to comprehensively identify vulnerable patients offers a pathway to reducing disparities in access, adherence, and ultimately clinical outcomes in pediatric cleft care.
Limitations
As a single-institution retrospective study, our results reflect the organization of our multidisciplinary team and may not be broadly applicable to other clinic environments and geographic areas without the strong level of follow-up support services and dedicated family support services employed by our program. Determination of neighborhood disadvantage at the census block level through the use of geocoded addresses is limited to a fixed point-in-time estimate and may not fully capture evolving neighborhood conditions. Further, composite measures such as the ADI and COI fail to assess various individual-, family-, and patient-level variables such as level of parental education, household income, and access to transportation which may affect observed outcomes.
Another important limitation of this study is the possibility of selection bias within the operative cohort, particularly among patients undergoing secondary procedures. Because this study only included patients who ultimately underwent surgery, individuals who were lost to follow-up prior to operative intervention were not captured. As a result, patients presenting for secondary surgery may represent a subset of families who were better able to maintain long-term engagement with cleft care, potentially underestimating the effects of socioeconomic disadvantage on access to revision procedures. Further, overlap of the study period with the COVID-19 pandemic may have affected follow-up adherence in ways unknown to the authors. During this time, many families experienced disruptions related to clinic scheduling, transportation, employment, childcare, and concerns about exposure to healthcare settings which may have exacerbated existing socioeconomic disparities.
Additionally, the relatively small cohort size and low number of adverse postoperative events may have limited our ability to detect modest associations between socioeconomic disadvantage and surgical outcomes. Therefore, negative findings should be interpreted cautiously and warrant validation in larger multi-institutional studies.
Future Directions
Based on these findings, several directions for future research should be considered. Prospective, multi-centered studies utilizing ADI and COI could confirm the generalizability of our results across varied geographic regions, populations, and healthcare systems. This is critical to separate the effect of neighborhood disadvantage from any effects of the COVID-19 pandemic. Incorporation of mixed-method study designs including survey and interview studies with families affected may provide valuable insight into variables not measured by ADI or COI. Identification of these specific variables will help to define concrete steps for designing study targets of interventional trials aiming to reduce disparities in cleft care outcomes.
Conclusion
In conclusion, this study demonstrates that neighborhood-level socioeconomic disadvantage is associated with meaningful differences in follow-up adherence among pediatric patients undergoing cleft lip repair, though these effects vary depending on the metric used to assess disadvantage. Together, these findings underscore that ADI, COI, and insurance status capture distinct and complementary dimensions of socioeconomic disadvantage. While multidisciplinary care can help mitigate these disparities, it is clear that socioeconomic determinants continue to play a vital role in patient outcomes. Incorporation of tools like ADI and COI may help to identify these at-risk patients and guide targeted interventions to provide equitable outcomes and improve care.
Supplementary Material
A total of 171 participants were identified via the CPT and ICD-10 codes after applying our inclusion and exclusion criteria.
Supplementary Table 2. Overall patient characteristics and outcomes across repair and revision procedures (n=171). *p<0.05, **p<0.01, ***p<0.001.
Supplementary Table 3. Cleft lip repair postoperative outcomes and follow-up adherence (n=100). *p<0.05, **p<0.01, ***p<0.001.
Supplementary Table 4. Cleft lip revision postoperative outcomes and follow-up adherence (n=82). *p<0.05, **p<0.01, ***p<0.001.
Funding Statement
Daniel Chu receives funding through the Medical Scientist Training Program (NIH grant T32 GM140935).
Footnotes
Statements and Declarations
Declaration of Conflicting Interest
The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Dr. Cho is co-founder and chief executive officer of CranioSure, LLC. Dr. Blum is co-founder and chief medical officer of CranioSure, LLC. All other authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Ethical Approval and Informed Consent Statements
This study was approved as exempt from full review by the University of Wisconsin-Madison institutional review board (protocol number 2023-0082). Informed consent was not required for this study as it involved retrospective data analysis without any direct patient interaction or intervention.
Data Availability Statement
The data supporting the conclusions of this study are available from the corresponding author upon reasonable request.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
A total of 171 participants were identified via the CPT and ICD-10 codes after applying our inclusion and exclusion criteria.
Supplementary Table 2. Overall patient characteristics and outcomes across repair and revision procedures (n=171). *p<0.05, **p<0.01, ***p<0.001.
Supplementary Table 3. Cleft lip repair postoperative outcomes and follow-up adherence (n=100). *p<0.05, **p<0.01, ***p<0.001.
Supplementary Table 4. Cleft lip revision postoperative outcomes and follow-up adherence (n=82). *p<0.05, **p<0.01, ***p<0.001.
Data Availability Statement
The data supporting the conclusions of this study are available from the corresponding author upon reasonable request.
