Growth in Children with a Cleft Lip and/or Palate in 8 US Hospitals: A Retrospective Cohort Study

JDR Clinical & Translational Research · 2026-03-31

OBJECTIVES: To evaluate growth patterns in US children with cleft overall and by cleft lip (CL), CL and palate (CLP), and cleft palate (CP) across US children's hospitals from 0 to 18 mo of age. DESIGN: We conducted a retrospective cohort study leveraging medical records from 2009 to 2022 in children with a cleft seen at 8 US children's hospitals. PARTICIPANTS: Individuals with a cleft seen at a PEDSnet consortium hospital. EXPOSURE: We examined growth over time, by cleft type, and across hospitals. MAIN OUTCOMES: We used electronic health data to generate weight-for-age z scores (WAZ) and length-for-age z scores (LAZ), as well as underweight (WAZ <-2) and stunting (LAZ <-2). We tracked longitudinal growth using generalized linear mixed models to estimate mean WAZ and LAZ from 0 to 18 mo of age. We compared the prevalence of underweight and stunting against World Health Organization growth standards. RESULTS: Our sample included 10,223 children: 19.1% with CL, 31.7% with CLP, and 49.2% with CP. WAZ and LAZ trajectories showed a fast rate of decline in the first 4 mo of life (P < 0.001). Between 6 and 12 mo and between 12 and 18 mo, WAZ showed a significant nonlinear increase in growth (P < 0.01) while LAZ remained unchanged (P > 0.05). All children had a higher prevalence of underweight and stunting relative to World Health Organization growth standards. Underweight and stunting were highest among those with CP, followed by CLP and then CL, and varied across hospitals. CONCLUSIONS: Growth trajectories were slower in the first 4 mo of life, followed by rapid catch-up in weight to 12 mo of age. Children with cleft had a high prevalence of underweight and stunting at all ages. Variability across hospitals suggests that care patterns may affect growth. Close growth monitoring in the first 4 mo in children with cleft may be warranted.Knowledge Transfer Statement:US children with a cleft of the lip and/or palate have substantial growth deficits that vary by cleft type, comorbidities, and across hospitals, particularly in the first 4 mo of life.

Preparing the Psychology Workforce: Outcomes of a Novel Post-Baccalaureate Training Program at an Academic Medical Center

Journal of Clinical Psychology in Medical Settings · 2026-03-11

Graduate school admissions are competitive, and few studies have documented post-baccalaureate (post-bacc) training program outcomes. This paper describes a post-bacc training program at an academic medical center and aims to (a) characterize participants and program recruitment, (b) examine productivity and graduate school matriculation, and (c) assess change in key outcomes (e.g., publications), demographic characteristics, and program reflections. Seventy-nine post-baccs have completed the post-bacc training program since 2017. Publication data were obtained via institution record-keeping and public resources (e.g., PubMed). Starting in 2021, new post-baccs (n = 28) completed entry and exit surveys (reporting demographics/academic history, awards/honors, publications/presentations, research skill confidence, and next steps). Of 79 post-baccs, 89% (n = 70) matriculated to graduate or medical school (41% clinical psychology). The median number of publications during training was three. Publications, presentations, and confidence were higher at exit vs. entry (p's < .05). There were no differences based on underrepresented group status (p > .05). Program satisfaction was high. Findings demonstrate success preparing post-baccs for admission into advanced degree programs, improving research productivity/skill (regardless of underrepresented group status), and garnering high satisfaction among post-baccs. This program model can serve as a bridge, offering rigorous clinical research training for the future workforce of clinical psychologists and related professionals.

Psychosocial Outcomes of the Stanford Orthodontic Airway Plate (OAP) Treatment in Caregivers and Children With Pierre Robin Sequence

The Cleft Palate-Craniofacial Journal · 2026-05-22

Objective This study assessed psychosocial outcomes in caregivers and quality of life (QoL) in children with Pierre Robin Sequence treated with the Stanford Orthodontic Airway Plate (OAP). Design A cross-sectional survey was completed by caregivers of 30 OAP-treated children (age at survey: 1.5 ± 1.1 years). Main Outcome Measure(s): Eight open-ended questions and one-sample t tests for: Connor-Davidson Resilience Scale-10 (CD-RISC-10); Kessler Psychological Distress Scale-6 (K6); Perceived Stress Scale (PSS); and Pediatric QoL Inventory (PedsQL). Results The mean CD-RISC-10 scores were similar to community samples. The K6 scores were significantly higher (Cohen d = 1.01), and PSS scores were lower (Cohen d = 0.82) than national averages. The mean PedsQL score was high (89.3 ± 8.4). While 78% of caregivers found OAP demanding, 68% indicated a preference for pursuing OAP earlier. Conclusions Caregivers reported low stress and high child QoL along with moderate distress, suggestive of the need for ongoing psychosocial supports for caregivers.

Understanding the Psychological Impact of Medical Care Experiences on Adults With Craniofacial Conditions: A Pilot Survey of Traumatic Stress Symptoms and Resilience

Journal of Craniofacial Surgery · 2025-03-31

Craniofacial conditions often require extensive medical care and surgeries throughout childhood and adolescence. However, there is limited research investigating the psychological effects of craniofacial care, including risks for medical traumatic stress. This cross-sectional study investigated the medical care experiences of adults with craniofacial conditions, including the frequency of potentially traumatic medical events, post-traumatic stress disorder (PTSD) symptoms, and resilience. Participants (N=34; mean age 35.2 ± 12.2 y; 71% female) were recruited at 3 US pediatric hospitals and craniofacial support organizations. Participants completed the PTSD Checklist (PCL-5), Connor-Davidson Resilience Scale, the Craniofacial Experiences Questionnaire, and open-ended questions about their medical care experiences. Most participants reported experiencing potentially traumatic medical experiences, such as prolonged and/or painful dental (79%) and medical treatments (73%) and hospitalization in the intensive care unit (70%). On the PCL-5, 21% met the criteria for PTSD, which is similar to other medical populations and higher than the 6% rate of PTSD in the general US population. Participants reported both stressors and positive aspects related to living with a craniofacial condition; however, resilience scores were lower relative to a US community sample. Qualitative analysis of open-ended responses identified themes including interactions with providers, medical treatment experiences, and psychosocial impacts. Adults with craniofacial conditions appear to be vulnerable to post-traumatic stress symptoms related to their medical care experiences, and report reduced resilience relative to community samples. Implications for clinical care and research include the integration of trauma-informed care approaches and strategies to support coping and resilience across the lifespan.

Ethical Considerations for Clinical Data Sharing in Craniofacial Research: Recommendations From a Multidisciplinary Working Group

The Cleft Palate-Craniofacial Journal · 2025-12-02

Objective To propose recommendations for ethical, participant-centered clinical data sharing in craniofacial research. Design Series of deliberative multidisciplinary expert working group meetings to develop recommendations. Setting Two 1-h virtual meetings; one all-day hybrid meeting. Patients, Participants Working group ( n = 16) comprised individuals with expertise in craniofacial research, bioethics, and patient/caregiver advocacy, as well as lived experience of craniofacial conditions. Interventions The working group first reviewed prior empirical data about research participant attitudes about data sharing then drafted initial recommendations that were built on the data and the group's collective expertise. Recommendations were iteratively refined until the group agreed upon their final presentation. Main outcome measures Working group endorsement of recommendations. Results The working group produced 16 recommendations that addressed considerations for primary and secondary researchers, data repositories, and the craniofacial research community across 5 domains. These domains address: (1) research team communication with participants, (2) data collection and protections, (3) data governance, (4) education for researchers, and (5) remaining research gaps. Recommendations highlight the importance of prioritizing the experiences of those with lived experience of craniofacial conditions in decision-making about data sharing, navigating varied perspectives on privacy protections for facial images, and striving to implement trustworthy data sharing and governance practices. Conclusions This summary of recommendations offers guidance for the craniofacial research community to advance participant-centered clinical data sharing practices. Ethical data sharing that accounts for participants’ experiences and values has potential to advance scientific research and improve outcomes for individuals with craniofacial conditions, their families, and their communities.

Gender Identity and Preferences in Children with Variations in Sex Development

Journal of Clinical Research in Pediatric Endocrinology · 2025-12-29

Objective: To assess gender-typed preferences and gender identity in children with and without variations in sex developments (VSDs). Methods: In this cross-sectional study, 78 children with VSDs (ages 3-12; mean age = 7 years; 55% White, non-Hispanic) recruited through specialty clinics in the United States and 78 children without VSDs (ages 3-13; mean age = 7 years; 55% White, Non-Hispanic) recruited through university-based community databases completed assessments of gender-typed toy, clothing and peer preferences, continuous and categorical measures of gender identity, and perceived similarity to boys and to girls. Results: Generally, children with and without VSDs did not differ in their gender development on 5 of 7 measures for each gender group. Children raised as girls who had VSDs had more masculine toy preferences, t(84.89) = 3.421; p = 0.001; d = 0.698, and viewed themselves as more similar to boys, t(67.43) = 2.994; p = 0.004; d = 0.648, than comparison children raised as girls. Boys with VSDs selected more masculine toys (t(55.17) = 2.413; p = 0.019; d = 0.623), and responded in a more-masculine way on the continuous gender identity measure (t(38.40) = 2.364; p = 0.023; d = 0.621), than did boys in the community comparison sample, though these effects, unlike the effects amongst girls, were not robust against corrections for multiple comparisons. Conclusion: During early and mid-childhood, VSDs were not strongly associated with differences in gender development. Future longitudinal research on the gender development of youth with VSDs is necessary, particularly as they mature into adolescence.

Psychosocial and Quality of Life Issues

2025-01-01 · 3 citations

Embarking on a Treatment Journey: Experiences of Caregivers of Young Children With Craniofacial Microsomia

Journal of Craniofacial Surgery · 2025-07-07 · 1 citations

Caregiver psychosocial adjustment can be impacted by their children's early treatment for craniofacial microsomia (CFM). A deeper understanding of caregiver early experiences is needed to advance family-centered clinical care. This study aimed to describe the range of caregiver experiences of CFM care for their young children to inform recommendations for providers. As part of the "Craniofacial Microsomia: Accelerating Research and Education" (CARE) program, health histories and narrative interviews were completed with a national sample of US caregivers (N=42) of children with CFM aged 3 to 17 years (mean=10.1, SD=4.5). Interviews (average 71 min) were in English (n=30) or Spanish (n=12) and primarily with mothers (93%). Thematic analysis was used to describe early care experiences. By age 3, 91% of children were diagnosed with hearing loss, 64% had participated in early developmental services, 38% had undergone at least one surgery, and 24% used hearing aids. Caregivers' experiences fit within themes of: (1) Burden of Care; (2) Adaptation; (3) Perceived Quality of Care; (4) Child's Physical Health; and (5) Early Surgical Interventions. CFM care in early childhood presented challenges for caregivers, which may be mitigated by health care providers reducing burdens of care, coordinating care, building trust, increasing CFM and hearing education, instilling hope, assisting with hearing aid access, referring to early interventions, screening for caregiver distress, linking caregivers to support services, promoting coping and social support, and preparing families thoroughly for surgeries.

Systematic Review of Growth in Young Children With Cleft Lip and/or Cleft Palate From 0 to 24 Months of Age

The Cleft Palate-Craniofacial Journal · 2025-08-12

Objective To conduct a systematic review on growth in young children with a cleft of the lip and/or palate (“cleft”). Design We searched 6 electronic databases for articles published on or before February 9, 2025 using MESH terms cleft lip/palate, growth, body weights/measures. We screened titles and abstracts iteratively using Rayyan's screening tool and manual review. Eligible studies underwent full-text review and anthropometric data extraction and synthesis. We excluded studies/estimates with N &lt; 20. Setting All published studies that reported anthropometric measures on children with cleft. Patients/Participants Children with cleft of age 0-24 months. Main Outcome Measures Comparable measures including weight and length percentiles, failure to thrive (typically &lt;5th percentile), weight-for-age z -scores (WAZ), length-for-age z -scores (LAZ), moderate/severe underweight (WAZ &lt; −2), and moderate/severe stunting (LAZ &lt; −2). Results 289 articles were selected for full-text review following title/abstract screening of the initially identified 5561 unique articles. 143 met the eligibility criteria, 46 of which had comparable anthropometric estimates. The estimates in most studies were lower than expected based on referent growth charts, and demonstrated mean WAZ near one standard deviation below the mean or between 10% and 50% of infants had failure to thrive and/or were underweight. Measures of growth related to length showed deficits but to a lesser degree than weight-based measures. Data beyond age 12 months were sparse. Conclusions Regardless of cleft type, young children with a cleft have worse attained growth than peers based on referent growth charts. Children with a cleft palate, with or without a cleft lip, had lower estimates than children with cleft lip.

Congenital medical conditions in childhood and adolescence, stigma, and psychosocial adjustment.

American Psychological Association eBooks · 2025-01-01