High-risk Infant Follow-up Research Articles

Resource and Service Use after Discharge Among Infants 22-25 Weeks Estimated Gestational Age at the First High-Risk Infant Follow-Up Visit in California

To examine resource and service use after discharge among infants born extraordinarily preterm in California who attended high-risk infant follow-up (HRIF) clinic by 12months corrected age. We included infants born 2010-2017 between 22+0/7 and 25+6/7weeks' gestational age in the California Perinatal Quality Care Collaborative and California Perinatal Quality Care Collaborative-California Children's Services HRIF databases. We evaluated rates of hospitalization, surgeries, medications, equipment, medical service and special service use, and referrals. We examined factors associated with receiving ≥ 2 medical services, and ≥ 1 special service. A total of 3941 of 5284 infants received a HRIF visit by 12months corrected age. Infants born at earlier gestational ages used more medications, equipment, medical services, and special services and had higher rates of referral to medical and special services at the first HRIF visit. Infants with major morbidity, surgery, caregiver concerns, and mothers with more years of education had higher odds of receiving ≥ 2 medical services. Infants with Black maternal race, younger maternal age, female sex, and discharge from lower level neonatal intensive care units (NICUs) had lower odds of receiving ≥ 2 medical services. Infants with more educated mothers, multiple gestation, major morbidity, surgery, caregiver concerns, and discharge from lower level NICUs had increased odds of receiving a special service. Infants born extraordinarily preterm have substantial resource use after discharge. High resource utilization was associated with maternal/sociodemographic factors and expected clinical factors. Early functional and service use information is valuable to parents and underscores the need for NICU providers to appropriately prepare and refer families.

Machine learning risk stratification for high-risk infant follow-up of term and late preterm infants.

Term and late preterm infants are not routinely referred to high-risk infant follow-up programs at neonatal intensive care unit (NICU) discharge. We aimed to identify NICU factors associated with abnormal developmental screening and develop a risk-stratification model using machine learning for high-risk infant follow-up enrollment. We performed a retrospective cohort study identifying abnormal developmental screening prior to 6 years of age in infants born ≥34 weeks gestation admitted to a level IV NICU. Five machine learning models using NICU predictors were developed by classification and regression tree (CART), random forest, gradient boosting TreeNet, multivariate adaptive regression splines (MARS), and regularized logistic regression analysis. Performance metrics included sensitivity, specificity, accuracy, precision, and area under the receiver operating curve (AUC). Within this cohort, 87% (1183/1355) received developmental screening, and 47% had abnormal results. Common NICU predictors across all models were oral (PO) feeding, follow-up appointments, and medications prescribed at NICU discharge. Each model resulted in an AUC > 0.7, specificity >70%, and sensitivity >60%. Stratification of developmental risk in term and late preterm infants is possible utilizing machine learning. Applying machine learning algorithms allows for targeted expansion of high-risk infant follow-up criteria. This study addresses the gap in knowledge of developmental outcomes of infants ≥34 weeks gestation requiring neonatal intensive care. Machine learning methodology can be used to stratify early childhood developmental risk for these term and late preterm infants. Applying the classification and regression tree (CART) algorithm described in the study allows for targeted expansion of high-risk infant follow-up enrollment to include those term and late preterm infants who may benefit most.

Neonatologist at the Well-Child Clinic: A High-Risk Infant Follow-up Pilot Study.

High-risk infant follow-up (HRIF) is a complex process lacking standardization. We present a simple, single-provider model that proved effective and is well-received by caregivers. In this study, we measured caregiver use and satisfaction with an HRIF visit attended by an experienced neonatologist in a well-care setting, soon after discharge. One hundred parents participated in the survey. Among the infants of these parents, 78% of infants were seen in the first 3 months of life and 39% within 1 month of discharge. Nutrition (98%) and development (97%) were the most commonly discussed topics, followed by general health (95%), iron supplementation (93%), and head size (90%). Using a 5-point Likert's scale, with 5 being the highest rating, parents responded that the meeting answered their questions (4.7, n = 93), organized their infants' needs (4.6, n = 90), and increased their confidence in caring for their infants (4.65, n = 92). HRIF with an experienced neonatologist is an effective means of increasing parents' understanding of their infants' medical needs and confidence in caring for their infants. · Meeting with a neonatologist after discharge addressed many crucial aspects of patient care.. · Meeting with a neonatologist after discharge was met with a high level of caregiver satisfaction.. · Neonatal consultation in the community may promote caregiver confidence in caring for their infant.. · Neonatal consultation reduced parental anxiety, especially regarding growth and development..

Challenges and Opportunities in High-Risk Infant Follow-Up: Progress from the 2022 Networking Session at the Pediatric Academic Societies

Challenges and Opportunities in High-Risk Infant Follow-Up: Progress from the 2022 Networking Session at the Pediatric Academic Societies

Identifying Autism Spectrum Disorder in a High-risk Follow-up Program through Quality Improvement Methodology.

Children born prematurely are at increased risk for autism spectrum disorder (ASD). ASD can be diagnosed between 18 and 24 months of age, but access barriers and medical complexity can delay diagnosis. ASD screening was implemented in a high-risk infant follow-up program using QI methodology. The project aimed to screen 60% of children and refer 90% of those with positive screens. The team developed a standardized workflow to administer the M-CHAT-R/F to HRIF patients between the ages of 16-22 months. Telehealth ASD assessment, using the TELE-ASD-PEDS, was conducted for those who screened positive. Monthly team meetings were held to implement change cycles and review the impact of the previous month's change. Within 7 months of program implementation, ASD screening exceeded the 60% aim. The program referred 72% of patients who screened as medium/high risk on the M-CHAT-R/F. The remaining patients were not referred per provider discretion. Twenty-seven percent of patients who received an autism evaluation received an ASD diagnosis. The average age at diagnosis was 22.5 months. An ASD screening protocol was implemented for patients enrolled in a high-risk infant follow-up program. Patients identified as at risk for ASD received an expedited telehealth ASD evaluation. The screening protocol was maintained for 13 months and is now part of the standard workflow. Screening has been expanded to other HRIF clinics, and evaluation appointments have been added to meet access needs. QI methodology is an effective tool for implementing ASD screening and referral in multidisciplinary HRIF programs.

Application of the Hammersmith Infant Neurological Examination in the developmental follow-up of high-risk infants.

To investigate the independent influences affecting the global score of the Hammersmith Infant Neurological Examination (HINE) in the early life of high-risk infants and to provide evidence for early effective screening and for evaluating interventions. We conducted a prospective cohort study of 258 high-risk infants assessed by the HINE and Gesell Developmental Diagnosis Schedule at 3, 6, 9, and 12 months corrected age. A multiple linear regression model was developed to investigate independent influences on HINE global score at 3 months corrected age. The accuracy of the HINE global score was analysed by calculating the discriminant, concurrent, and predictive validities according to ages. There were nine independent influences affecting the HINE global score at 3 months corrected age in high-risk infants. The discriminant, concurrent, and predictive validities of the HINE for gross motor developmental delays at 12 months corrected age were all statistically significant (p < 0.05). Different neonatal clinical settings are related to the HINE global score of high-risk infants early in life. The HINE can be used for longitudinal monitoring of neurological development in the first year of life in a typical Chinese clinical setting and the findings at all four ages tested relate to neuromotor outcomes at 12 months corrected age.

Ensuring Optimal Outcomes for Preterm Infants after NICU Discharge: A Life Course Health Development Approach to High-Risk Infant Follow-Up.

Children born prematurely (<37 weeks' gestation) have an increased risk for chronic health problems and developmental challenges compared to their term-born peers. The threats to health and development posed by prematurity, the unintended effects of life-sustaining neonatal intensive care, the associated neonatal morbidities, and the profound stressors to families affect well-being during infancy, childhood, adolescence, and beyond. Specialized clinical programs provide medical and developmental follow-up care for preterm infants after hospital discharge. High-risk infant follow-up, like most post-discharge health services, has many shortcomings, including unclear goals, inadequate support for infants, parents, and families, fragmented service provisions, poor coordination among providers, and an artificially foreshortened time horizon. There are well-documented inequities in care access and delivery. We propose applying a life course health development framework to clinical follow-up for children born prematurely that is contextually appropriate, developmentally responsive, and equitably deployed. The concepts of health development, unfolding, complexity, timing, plasticity, thriving, and harmony can be mapped to key components of follow-up care delivery to address pressing health challenges. This new approach envisions a more effective version of clinical follow-up to support the best possible functional outcomes and the opportunity for every premature infant to thrive within their family and community environments over their life course.

A Call for Early Detection of Cerebral Palsy.

Cerebral palsy (CP) is the most common physical disability across the lifespan, but historically, CP has not been diagnosed before the age of 2 years. Barriers to early diagnosis ranged from lack of available biomarkers, absence of curative treatments, perceived stigma associated with a lifelong diagnosis, and a desire to rule out other diagnoses first. Most importantly, the fundamental question that remained was whether children would benefit from earlier detection and intervention given the paucity of research. However, evidence-based guidelines published in 2017 demonstrated that the General Movements Assessment, the Hammersmith Infant Neurological Examination, and neuroimaging can be combined with other elements such as a clinical history and standardized motor assessments to provide the highest predictive value for diagnosing CP as early as age 3 months in high-risk newborns. Implementation of these guidelines has been successful in decreasing the age at CP diagnosis, particularly in high-risk infant follow-up clinics with expertise in performing these assessments. Early detection of CP allows for clinical and research opportunities investigating earlier interventions during a critical period of neuroplasticity, with the goal of improving developmental trajectories for children and their families. New guidelines and research are now being developed with a focus on early, targeted interventions that continue to be studied, along with global detection initiatives.

Neurodevelopment of patients who received intravitreal bevacizumab or aflibercept for type 1 and aggressive retinopathy of prematurity.

We aimed to compare the neurodevelopment of patients who received intravitreal bevacizumab (IVB) and intravitreal aflibercept (IVA) for type 1 retinopathy of prematurity (ROP) and aggressive ROP (A-ROP) using the Ages and Stages Questionnaire (ASQ-3) test. Patients who underwent IVB (group 1), IVA (group 2), and patients who did not receive treatment (group 3) were included in the prospective-controlled study. The patients were grouped as low-intermediate-high risk according to the high-risk infant follow-up guide. With the ASQ-3 test, fine and gross motor movements, communication, problem solving, and personal-social developments of the patients were compared. The gender distribution, birth weight (BW), and neonatal risk category of the groups were similar. Gestational age (GA) of group 1 was found to be lower compared to group 3. There was no difference between the groups in the development of gross and fine motor movements, communication and problem solving. The personal and social development of group 1 and group 2 was found to be retarded compared to the control group. As a result, the detection of retardation in the personal and social areas in the treated patients, and the detection of retardation in other areas, although not significant, reveals the necessity of following the development of these patient groups and providing the necessary support in the areas where retardation is detected.

Early childhood outcomes of NICU graduates with cytomegalovirus infection in California.

To assess demographics and outcomes up to 3 years of age among children with cytomegalovirus (CMV) infection in California neonatal intensive care units (NICUs) during 2010-2021. The California Perinatal Quality Care Collaborative (CPQCC) collects data on all very low birth weight (VLBW, birth weight ≤ 1500 g) and acutely ill infants with birth weight > 1500 g across 92% of NICUs in California. VLBW infants and those with neurological conditions are referred to a statewide high-risk infant follow-up (HRIF) program. CMV infection was defined as a positive culture or PCR identified during the NICU hospitalization. During 2010-2021, CMV reporting rates averaged 3.5/1000 VLBW infants (n = 205) and 1.1/1000 infants >1500 g (n = 128). Among all 333 infants with CMV, 314 (94%) were discharged home alive, 271 (86%) were referred for HRIF and 205 (65%) had ≥1 visit. Whereas infants born to mothers <20 years of age had highest CMV reporting rates and those born to Hispanic mothers comprised 49% of all infected infants, they had the highest loss of follow-up. At the 12-month visit (n = 152), 19 (13%) infants with CMV had bilateral blindness and 18 (12%) had hearing loss. At the 24-month visit, 5 (5%) of 103 had severe cerebral palsy. Among infants admitted to the NICU, those with CMV diagnoses may over represent infants with more severe CMV disease and outcomes. The CPQCC and HRIF program findings may help inform implementation of surveillance for congenital CMV infection in other U.S. states and guide strategies to reduce disparities in access to services.

Meeting the Needs of Postpartum Women: Provider Perspectives on Maternal Contraceptive Care in Pediatric Settings.

Closely spaced, mistimed, and unwanted pregnancies are common among postpartum women and can lead to adverse maternal and perinatal outcomes. Women inconsistently attend postpartum obstetric visits, though they reliably interface with pediatric providers during the postpartum months, presenting novel opportunities to identify and address unmet family planning needs. We conducted a qualitative study to explore pediatric provider perspectives on addressing maternal family planning in three settings: a neonatal intensive care unit, a primary care clinic, and a high-risk infant follow-up clinic. Pediatric providers were generally open to incorporating postpartum family planning screening and counseling into a pediatric encounter, if given appropriate training and implementation support. Providers largely agreed that contraceptive provision to women was not feasible in their practices, and they shared ideas for utilizing the pediatric encounter to connect women with comprehensive contraceptive care. Pediatric providers perceived postpartum family planning screening and counseling, and not contraceptive provision, as potentially acceptable and feasible in their practice settings. These exploratory findings justify further investigation to assess their generalizability and to develop postpartum family planning interventions for pediatrics.

Providing Continuity in Infant Mental Health Services for Medically Fragile Infants and Their Families

Having a baby who is prenatally or postnatally diagnosed with a medical condition places considerable stress on the parents, infants, and their developing relationship. Infant mental health (IMH) services offer an opportunity to address the challenges and support the parent-infant relationship. The present study outlined a continuum of care IMH program embedded within various medical settings of a large metropolitan children’s hospital. Applications of IMH principles within the fetal care center, neonatal intensive care unit, high risk infant follow-up clinic, and the patient’s home are described. Descriptive data about families served across settings and a case study are provided in order to illustrate the implementation of this unique IMH intervention model.

Neurodevelopmental outcomes of infants referred to High-Risk Infant Follow-up (HRIF) program at a tertiary care centre

The Sri Lanka Journal of Perinatal Medicine (SLJPM) was launched in 2019 as the official journal of the Perinatal Society of Sri Lanka. This journal is unique in the fact that it brings together three core specialties of perinatal medicine - obstetrics, neonatology and community medicine. It is an open access peer reviewed journal containing original research articles, expert reviews, current practices and other articles of interest to all involved in perinatal medicine.

Postnatal growth of small for gestational age late preterm infants: determinants of catch-up growth

BackgroundFailure to recover growth is a risk reported in late preterm population. This study aimed to evaluate the auxological outcome of late preterm infants and identify factors associated with failure to recover growth.MethodsWe enrolled late preterm infants with birth weight ≤10th percentile, followed up at High-Risk Infant Follow-up Service. We collected data at birth and at follow-up visits. A logistic regression analysis was performed to assess variables independently associated with growth failure.ResultsThe population consisted of 175 preterms. The percentage of children showing no weight recovery was 34% at 36 months. At logistic regression analysis, infants who had not regained weight at 12 months had a higher risk of not regaining weight even at 36 months. The same risk factor was highlighted for length catch-up growth. Moreover, infants fed any human milk at discharge were protected from not achieving both weight and length catch-up growth at 36 months.ConclusionThese results indicate that children born late preterm and small for gestational age could fail to recover weight and stature growth in the first 36 months. The protective effect of human milk on failure to thrive highlights the importance of promoting breastfeeding in this population.ImpactA significant number of SGA late preterms show a failure to recover weight and statural growth.Having experienced intrauterine growth restriction is associated with a greater chance of achieving statural catch-up growth.Being born singleton represents a risk factor for slower weight and height growth velocity.Breastmilk has a protective effect on failure to recover adequate weight and length in preterm SGA infants. This finding highlights the importance of promoting breastfeeding in this population.

The impact of Kaizen approach on neurodevelopmental follow-up of high-risk infants

ABSTRACT Kaizen methodology was implied as a tool for analyzing the current workflow, defining opportunities, developing a solution, and measuring the outcome. The current study aims to verify the early effect of a quality improvement study within the scope of the Kaizen approach to improve the quality of high-risk infant care. Initially, a value stream map was used to define the current follow-up plan. Then, a specific outpatient clinic was established with a standard follow-up schedule. The high-risk infants were evaluated with the same tools at the same corrected ages, and the multidisciplinary team performed appropriate family education. The early outcome was evaluated by Parents’ Satisfaction Levels with High-Risk Infant Care Questionnaire and Parenting Stress Index-Short Form. Thirty-four parents were included. The mean corrected age of the infants was 140.07 ± 146.55 days. Parents’ satisfaction scores were improved from 99.79 ± 17.17–121.61 ± 15.33 (P = 0.000), while perceived stress scores were decreased (98.03 ± 23.55 vs 86.18 ± 20.95), (P = 0.001). The main stages of the quality improvement process were described. The current research presents the preliminary results of a Kaizen implementation for neurodevelopmental follow-up of high-risk infants.

Factors associated with the follow-up of high risk infants discharged from a neonatal intensive care unit.

The study aimed to identify factors associated with compliance to follow-up (FU) appointments among infants following their discharge from the neonatal intensive care unit (NICU). This retrospective cohort study reviewed 657 infants (birth weight <1500g or gestational age [GA] <32 weeks), born between 2011 and 2015. A total of 525 eligible infants were classified into two groups: the compliant group (n=360), who attended clinics from 18 to 24 months, and the non-compliant group (n=165), who were lost to FU before 18 months. The non-compliant group was more likely to have higher usage rate of assisted reproductive technology (p=0.023), GA (p<0.001), weight (p<0.001), height (p<0.001), and head circumference (p<0.001) at birth. The sibling number was higher in the non-compliant group (p=0.011). Moreover, the non-compliant group demonstrated higher Apgar scores at 1min and 5min (p=0.002 and p=0.031, respectively). The compliant group was more likely to live in metropolitan or larger cities with a borderline significance (p=0.056). Furthermore, the non-compliant group was less likely to suffer from respiratory distress syndrome (p<0.001), patent ductus arteriosus (p=0.002), retinopathy of prematurity (p=0.007), necrotizing enterocolitis (p=0.019), and bronchopulmonary dysplasia (p<0.001). Moreover, it demonstrated lower postmenstrual age at discharge (p=0.005) and a shorter length of stay in the NICU (p<0.001). The compliance with FU appointment varied with the assigned doctor (p<0.001). The multivariate regression analysis mentioned that the birth weight (OR=0.903), residence in metropolitan or larger cities (OR=1.495), and an experience of magnetic resonance imaging (OR=1.920) were associated with compliance. The compliance to FU appointments was different according to the assigned doctor at admission (OR=0.357). The birth weight, residence in metropolitan or larger cities, an experience of MRI, and the assigned doctors were associated with compliance to FU at a corrected age of 18-24 months.

Rates of connection to early intervention from the neonatal intensive care unitin a high risk infant follow-up program.

Rates of connection to early intervention from the neonatal intensive care unitin a high risk infant follow-up program.

Disparities and Early Engagement Associated with the 18- to 36-Month High-Risk Infant Follow-Up Visit among Very Low Birthweight Infants in California

To determine follow-up rates for the high-risk infant follow-up (HRIF) visit at 18-36months among infants with very low birthweights and identify factors associated with completion. We completed a retrospective cohort study using linked California Perinatal Quality of Care Collaborative neonatal intensive care unit, California Perinatal Quality of Care Collaborative California Children's Services HRIF, and Vital Statistics Birth Cohort databases. We identified maternal, sociodemographic, neonatal, clinical, and HRIF program level factors associated with the 18- to 36-month follow-up using multivariable Poisson regression. From 2010 to 2015, among 19 284 infants with very low birthweight expected to attend at least 1 visit at 18-36months, 10 249 (53%) attended. On multivariable analysis, factors independently associated with attendance at an 18- to 36-month visit included estimated gestational age (relative risk [RR], 1.21; 95% CI, 1.15-1.26; <26weeks vs ≥31weeks), maternal education (RR, 1.09; 95% CI, 1.06-1.12; college degree or more vs high school), distance from clinic (RR, 0.92; 95% CI, 0.89-0.97; fourth quartile vs first quartile), and Black non-Hispanic race vs White race (RR, 0.88; 95% CI, 0.84-0.92). However, completion of an initial HRIF visit within the first 12months was the factor most strongly associated with completion of an 18- to 36-month visit (RR, 6.47; 95% CI, 5.91-7.08). In a California very low birthweight cohort, maternal education, race, and distance from the clinic were associated with sustained HRIF participation, but attendance at a visit by 12months was the most significantly associated factor. These findings highlight the importance of early engagement with all families to ensure equitable follow-through for children born preterm.

A Family-Centered, Multidisciplinary Clinic for Early Diagnosis of Neurodevelopmental Impairment and Cerebral Palsy in China-A Pilot Observation.

BackgroundComprehensive multidisciplinary assessment of neurodevelopmental outcomes of high-risk neonates may have significant challenges in low- and middle-income countries, in addition to socio-cultural barriers. We aimed to compare the time to diagnosis of neurodevelopmental impairment (NDI) and cerebral palsy (CP) in preterm neonates (<29 weeks) at a multidisciplinary assessment and care (MDAC) clinic with that of a conventional high-risk infant follow-up clinic in China.MethodsAll eligible surviving very preterm neonates born at <29 weeks gestation at the University of Hong Kong–Shenzhen Hospital between January 2015 and December 2019 were followed up in conventional (2015–2017) and MDAC (2018–2020) clinics up to 2 years corrected age with clinical demographic information collected in a prospective database. The MDAC team used standardized developmental assessments. The rates and timing of diagnosing NDI and CP in two epochs were compared.ResultsThe rates of NDI and CP were not different in two epochs [NDI: 12 (50%) vs. 12 (41%); CP: 3 (12%) vs. 2 (7%) of 24 and 29 surviving infants assessed in conventional and MDAC clinics, respectively]. Infants in the MDAC clinic were diagnosed with NDI and CP earlier than those in the pre-MDAC epoch (6 vs. 14 months corrected age, respectively, P < 0.05).ConclusionHigh-risk preterm neonates can be followed more effectively in a family-centered, child-friendly multidisciplinary clinic, leading to an earlier diagnosis of NDI and CP. Early counseling and interventions could be implemented accordingly.

Connecting to Early Intervention Services After Neonatal Intensive Care Unit Discharge in a Medicaid Sample.

To describe caregiver perspectives regarding connecting to early intervention (EI) services after neonatal intensive care unit discharge in a Medicaid sample. Open-ended semistructured interviews and focus groups were conducted with English- or Spanish-speaking families enrolled in Medicaid in an urban high-risk infant follow-up clinic at a safety-net center, which serves preterm and high-risk term infants. We generated salient themes using inductive-deductive thematic analysis. Thirty-two participants completed the study. The infant's median (interquartile range) birth weight was 1365 (969, 2800) grams; 50% were Hispanic; 31% reported living in a neighborhood with fourth quartile economic hardship. Eighty-one percent were classified as having chronic complex disease per the Pediatric Medical Complexity Algorithm and 63% had a diagnosis of developmental delay. A conceptual model was constructed and the analysis revealed major themes describing families' challenges and ideas to facilitate connection to EI. We identified subthemes related to the person in environment: health care environment/support and socio-economic resources, parent perspectives and built environment; provider level factors such as appointment scheduling, staff limitations, and parent suggestions to improve health care and service navigation, which included improved information sharing, the importance of patient advocates, video resources, early referrals to EI facilitated by the discharging hospital and system workarounds. The results from this study may provide a granular roadmap for providers to help facilitate referrals to EI services. We identified several ideas such as using advocates and providing transitional resources, including online media, that might improve the connection to EI services.