High-risk Infant Follow-up Programs Research Articles

Parenting Stress Following a Neonatal Intensive Care Unit Hospitalization: A Longitudinal Study of Mothers and Fathers.

A neonatal intensive care unit (NICU) hospitalization can add significant stress to the postpartum period. Parents experience isolation and uncertainty, which can affect their capacity to bond with their new baby. Understanding how stress is shaped by and changes following a NICU experience will help in developing supports for these families. We examined patterns of parenting stress over the first year of life following a NICU stay to better understand changes in stress, differences in maternal and paternal stress, and how medical and developmental variables impact parent stress. Parents of infants (n = 51) who had experienced a NICU hospitalization and met criteria for California's High-Risk Infant Follow-Up program completed assessments at 6, 9, and 12 months. A comparison group (n = 38) from a historic dataset included parents of infants born full term without medical complications. NICU parents reported higher levels of parenting stress at 6 months, but not 12 months, with mothers and fathers reporting similar stress levels. Parenting-related stress was found to be relatively stable and consistent over this period. Among NICU parents, lower developmental level at 12 months was associated with more distress in interacting with their child. These findings highlight the importance of monitoring parenting stress following discharge from the NICU and developing interventions for supporting parents of NICU graduates showing developmental delays.

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.

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.

Organizational Health Literacy as a Tool for Health Equity: Application in a High-Risk Infant Follow-Up Program.

Healthy People 2030 emphasizes personal health literacy (individual skills) and organizational health literacy-the degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others. However, research on the latter is in the early stages. This study describes an organizational health literacy assessment in a U.S. urban academic children's hospital. A variety of evidence-based health literacy assessments were used to assess patient information materials and the environment, including institutional practices, navigation, culture and language, and communication. Trained interviewers and analysts reached consensus for all assessments. Information Items: SMOG scores (n = 9) ranged from 7th- to 14th-grade reading level (average = 11.3). PEMAT-P scores (n = 9) ranged from 43.8% to 93.8% understandability and 0% to 80% actionability. CDC CCI scores (literacy demand) (n = 6) ranged from 18.2% to 58.8% (≥90% = excellent). SAM scores (suitability) (n = 6) fell in the "adequate" range (43.2-58.3%). The PMOSE/IKIRSCH scores (complexity) (n = 3) noted low-moderate difficulty. Apter's Hierarchy (n = 4) revealed three numeracy domains (50% = descriptive purposes and decision-making, 100% = interpreting information). Organization-level: Walking interviews highlighted organizational facilitators and barriers related to the pre-visit and visit environments. HLE2 domain scores ranged from 52% to 68%. Organizational health literacy demands far outweigh the average literacy skills of adults in the U.S. (patients and staff). Findings can be used to hone quality improvement and other processes to focus on structural solutions to increase health equity.

Virtual Visits for Developmental Screening in High-Risk Infants.

The High-Risk Infant Follow-Up program screens neonatal intensive care unit graduates for developmental delays and refers patients to physical, occupational, or speech therapy. At Kaiser Permanente Downey, the High-Risk Infant Follow-Up program assessed development via video visits during the COVID-19 pandemic. This study compares rates of enrollment in and referral to therapies and California Regional Center services between infants assessed by video visits and those assessed in person. Study participants included infants in the High-Risk Infant Follow-Up program between March 2020 and March 2021 with developmental assessments at adjusted ages 6, 12, and 18 months. Rates of enrollment in services and referral to physical, occupational, and speech therapy and Regional Center services were compared between infants assessed virtually and in person. There were no significant differences in rates of enrollment or referral to physical, occupational, or speech therapy services or Regional Center services. The rate of referral at any of the 3 visits was 8.6% at in-person visits and 10.9% at virtual visits (p = 0.49). Infants whose first visit was virtual were just as likely to complete all 3 developmental assessments as those whose first visit was in person. The COVID-19 pandemic stay-at-home orders provided a "natural experiment" demonstrating the effectiveness of virtual visits as compared to in-person visits. Although the developmental assessment tool used was not standardized to be used virtually, virtual visits were just as likely to result in referrals to services and did not lead to loss of follow-up. Virtual visits may be useful and convenient for some families, but further study is required.

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.

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.

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.

Impact of the Coronavirus Pandemic on High-Risk Infant Follow-Up (HRIF) Programs: A Survey of Academic Programs.

Objective: The impact of the COVID-19 pandemic on the functioning and services of academic high-risk infant follow-up (HRIF) clinics throughout North America. Study Design: Prospective 25-question questionnaire survey through REDCAP links that was sent over 10 weeks, to 105 US and 10 Canadian programs. Finally, 59 of 105 US programs and 5 of 10 Canadian responses were analyzed using SAS version 9.4. Results: In the US, 67% of programs reported closures between 1–5 months, whereas in Canada 80% of programs closed for 1–3 months. In the US 86% of programs provided telemedicine visits and only 42.5% provided multidisciplinary HRIF telemedicine visits. We enumerated innovative approaches specifically for the conduct of Telemedicine visits, the need for the standardization of various tests and services in a telemedicine setting, and to emphasize the urgent need for more government funding to improve follow-up and developmental services to this fragile group of newborns.

Rural Residence and Factors Associated with Attendance at the Second High-Risk Infant Follow-up Clinic Visit for Very Low Birth Weight Infants in California.

This study was aimed to determine factors associated with attendance at the second high-risk infant follow-up (HRIF) visit (V2) by 20 months of corrected age after a successful first visit (V1), and the impact of rural residence on attendance rates in a statewide population of very low birth weight (VLBW; <1,500 g) infants. Data linked from the California Perinatal Quality of Care Collaborative (CPQCC) Neonatal Intensive Care Unit (NICU) database and CPQCC-California Children's Services (CCS) HRIF database. Multivariable logistic regression evaluated independent associations of sociodemographic, maternal, family, neonatal clinical, and individual HRIF program differences (factors) with successful V2 in VLBW infants born in 2010 to 2012. Of 7,295 eligible VLBW infants, 75% (5,475) attended V2. Sociodemographic factors independently associated with nonattendance included maternal race of Black (adjusted odds ratio [aOR] = 0.61; 95% confidence interval [CI]: 0.5-0.75), public insurance (aOR = 0.79; 95% CI: 0.69-0.91), and rural residence (aOR = 0.74; 95% CI: 0.61-0.9). Factors identified at V1that were associated with V2 attendance included attending V1 within the recommended window (aOR = 2.34; 95% CI: 1.99-2.75) and early intervention enrollment (aOR = 1.39; 95% CI: 1.12-1.61). Neonatal factors associated with attendance included birth weight ≤750 g (aOR = 1.83; 95% CI: 1.48-2.5). There were significant program differences with risk-adjusted rates ranging from 43.7 to 99.7%. Sociodemographic disparities and HRIF program factors are associated with decreased attendance at V2 among VLBW infants. These findings highlight opportunities for quality and process improvement interventions starting in the NICU and continuing through transition to home and community to assure participation in HRIF. · Only 75% of VLBW infants attended the second HRIF visit.. · Those less likely to attend were Black or had rural residence.. · Infants in early intervention or attending first visit within recommended ages were more likely to attend..

Evaluating Clinical and Educational Experiences with Telemedicine in a Multidisciplinary High-Risk Infant Follow-Up Program due to the COVID-19 Response

Evaluating Clinical and Educational Experiences with Telemedicine in a Multidisciplinary High-Risk Infant Follow-Up Program due to the COVID-19 Response

Quality improvement for NICU graduates: Feasible, relevant, impactful

Continuous quality improvement (CQI) has become a vital component of newborn medicine. Applying core principles – robust measurement, repeated small tests of change, collaborative learning through data sharing – have led to improvements in care quality, safety, and outcomes in the Neonatal Intensive Care Unit (NICU). High-risk infant follow-up programs (HRIF) have historically aided such quality improvement efforts by providing outcomes data about NICU interventions. Though as a discipline, HRIF has not universally embraced CQI for its own practice. In this review, we summarize the history of CQI in neonatology and applications of improvement science in healthcare and describe examples of CQI in HRIF. We identify the need for consensus on what defines ‘high-risk’ and constitutes meaningful outcomes. Last, we outline four areas for future investment: establishing evidence-based care delivery systems, standardizing outcomes and their measures, embracing a family-centered approach prioritizing parent goals, and developing professional standards of care for HRIF.

Factors associated with follow-up of infants with hypoxic-ischemic encephalopathy in a high-risk infant clinic in California.

To determine the rates of high-risk infant follow-up (HRIF) attendance and the characteristics associated with follow-up among infants with hypoxic-ischemic encephalopathy (HIE) in California. Using population-based datasets, 1314 infants with HIE born in 2010-2016 were evaluated. The characteristics associated with follow-up were identified through multivariable logistic regression. 73.9% of infants attended HRIF by age 1. Follow-up rates increased and variation in follow-up by clinic decreased over time. Female infants; those born to African-American, single, less than college-educated, or publicly insured caregivers; and those referred to high-volume or regional programs had lower follow-up rates. In multivariable analysis, Asian and Pacific Islander race/ethnicity had lower odds of follow-up; infants with college- or graduate school-educated caregivers or referred to mid-volume HRIF programs had greater odds. Sociodemographic and program-level characteristics were associated with lack of follow-up among HIE infants. Understanding these characteristics may improve the post-discharge care of HIE infants.

Beyond the First Wave: Consequences of COVID-19 on High-Risk Infants and Families.

The novel coronavirus disease 2019 (COVID-19) pandemic is affecting care for high-risk newborns in ways that will likely be sustained beyond the initial pandemic response. These novel challenges present an urgent imperative to understand how COVID-19 impacts parent, family, and infant outcomes. We highlight three areas that warrant targeted attention: (1) inpatient care: visitation policies, developmental care, and communication practices; (2) outpatient care: high-risk infant follow-up and early intervention programs; and (3) parent psychosocial distress: mental health, social support, and financial toxicity. Changes to care delivery in these areas provide an opportunity to identify and implement novel strategies to provide family-centered care during COVID-19 and beyond. Key Points The COVID-19 pandemic is influencing care delivery for high-risk newborns and their families.Rapid changes to care delivery are likely to be sustained beyond the initial pandemic response.We have an urgent imperative to understand how COVID-19 impacts infant, parent, and family outcomes.

Network Implementation of Guideline for Early Detection Decreases Age at Cerebral Palsy Diagnosis.

Early diagnosis of cerebral palsy (CP) is critical in obtaining evidence-based interventions when plasticity is greatest. In 2017, international guidelines for early detection of CP were published on the basis of a systematic review of evidence. Our study aim was to reduce the age at CP diagnosis throughout a network of 5 diverse US high-risk infant follow-up programs through consistent implementation of these guidelines. The study leveraged plan-do-study-act and Lean methodologies. The primary outcome was age at CP diagnosis. Data were acquired during the corresponding 9-month baseline and quarterly throughout study. Balancing measures were clinic no-show rates and parent perception of the diagnosis visit. Clinic teams conducted strengths, weaknesses, opportunities, and threats analyses, process flow evaluations, standardized assessments training, and parent questionnaires. Performance of a 3- to 4-month clinic visit was a critical process step because it included a Hammersmith Infant Neurologic Examination, a General Movements Assessment, and standardized assessments of motor function. The age at CP diagnosis decreased from a weighted average of 19.5 (95% confidence interval 16.2 to 22.8) to 9.5 months (95% confidence interval 4.5 to 14.6), with P = .008; 3- to 4-month visits per site increased from the median (interquartile range) 14 (5.2-73.7) to 54 (34.5-152.0), with P < .001; and no-show rates were not different. Parent questionnaires revealed positive provider perception with improvement opportunities for information content and understandability. Large-scale implementation of international guidelines for early detection of CP is feasible in diverse high-risk infant follow-up clinics. The initiative was received positively by families and without adversely affecting clinic operational flow. Additional parent support and education are necessary.

Early Intervention Referral Outcomes for Children at Increased Risk of Experiencing Developmental Delays.

The primary goal was to examine outcomes of Part C early intervention (EI) referrals from a high-risk infant follow-up program and factors associated with success. A secondary aim was to determine how many referred children not evaluated by EI would have likely qualified by either automatically meeting state eligibility criteria with a condition associated with "high-probability" for developmental delays or having test scores evidencing developmental delays. Participants included 77 children referred directly to EI from a high-risk infant follow-up program. Scores on the Bayley Scales of Infant and Toddler Development-III, basic demographics, and medical variables were extracted from electronic medical records. Information regarding referral outcomes was gathered via follow-up phone calls to EI programs several months after referral. Results indicate 62% of EI referrals resulted in evaluation, with 69% of those evaluated being found eligible for services. Overall, 34% of referrals resulted in EI enrollment. Of those who were not evaluated, 71% were likely to have qualified based on state eligibility criteria. Follow-up phone call results indicated the majority of families not evaluated (64%) were never successfully contacted by the EI program. Findings from the present study illustrate the extent of challenges in connecting families with needed EI services and indicate an opportunity for improvement in EI referral processes to increase enrollment for eligible children. Improved communication between referral sources and service providers could support enrollment with detailed documentation of prior testing and explicit reasons for referral. Follow-up calls to confirm receipt of referral may also be necessary.

Factors Associated with Successful First High-Risk Infant Clinic Visit for Very Low Birth Weight Infants in California

To determine rates of at least 1 high-risk infant follow-up (HRIF) visit by 12months corrected age, and factors associated with successful first visit among very low birth weight (VLBW) infants in a statewide population-based setting. We used the linked California Perinatal Quality of Care Collaborative and California Perinatal Quality of Care Collaborative-California Children's Services HRIF databases. Multivariable logistic regression examined independent associations of maternal, sociodemographic, neonatal clinical, and HRIF program factors with a successful first HRIF visit among VLBW infants born in 2010-2011. Among 6512 VLBW children referred to HRIF, 4938 (76%) attended a first visit. Higher odds for first HRIF visit attendance was associated with older maternal age (OR, 1.48; 95% CI, 1.27-1.72; 30-39 vs 20-29years), lower birth weight (OR, 2.11; 95% CI, 1.69-2.65; ≤750g vs 1251-1499g), private insurance (OR, 1.65; 95% CI, 1.19-2.31), a history of severe intracranial hemorrhage (OR, 1.61; 95% CI, 1.12-2.30), 2 parents as primary caregivers (OR, 1.18, 95% CI 1.03-1.36), and higher HRIF program volume (OR, 2.62; 95% CI, 1.88-3.66; second vs lowest quartile); and lower odds with maternal race African American or black (OR, 0.65; 95% CI, 0.54-0.78), and greater distance to HRIF program (OR, 0.69; 95% CI, 0.57-0.83). Rates varied substantially across HRIF programs, which remained after risk adjustment. In a population-based California VLBW cohort, maternal, sociodemographic, and home- and program-level disparities were associated with HRIF non-attendance. These findings underscore the need to identify challenges in access and resource risk factors during hospitalization in the neonatal intensive care unit, provide enhanced education about the benefits of HRIF, and create comprehensive neonatal intensive care unit-to-home transition approaches.

Programmatic and Administrative Barriers to High-Risk Infant Follow-Up Care.

This article characterizes programmatic features of a population-based network of high-risk infant follow-up programs and identifies potential challenges associated with attendance from the providers' perspective. A web-based survey of high-risk infant follow-up program directors, coordinators, and providers of a statewide high-risk infant follow-up system. Frequencies and percentages were used to describe the survey responses. Of the 68 high-risk infant follow-up programs in California, 56 (82%) responded to the survey. The first visit no-show rate between 10 and 30% was estimated by 44% of programs with higher no-show rates for subsequent visits. Common strategies to remind families of appointments were phone calls and mailings. Most programs (54%) did not have a strategy to help families who lived distant to the high-risk infant follow-up clinic. High-risk infant follow-up programs may lack resources and effective strategies to enhance follow-up, particularly for those living at a distance.

Clinical Outcomes of High-Risk Infant Follow-Up Program in a Tertiary Care Centre.

Background:High-risk infant follow-up (HRIF) program is necessary for early detection, timely intervention, and promotion of health outcomes in vulnerable infants, ethically. The present study was carried out to assess the clinical outcomes of the HRIF Program in Alzahra hospital as a tertiary care centre, in Iran.Materials and Methods:In this cohort study, 5840 neonates were born at Alzahra hospital, from June 1, 2011 to 30th February 2012. Among those who were admitted to neonatal intensive care unit (NICU), 253 infants were recruited by census according to HRIs criteria. After doing necessary measurements and family education, information was recorded in HRI health certificate and then entered in the access database for analysis.Results:From 253 eligible HRIs registered, 241 (95%) infants attended the follow-up clinic after discharge. A total of180 cases were recalled for further visits, 110 of which attended the clinic. Anthropometric indices had an increasing trend in the first 6 months of life. There was no significant relation between ages and stages questionnaire (ASQ) results and infant birth weight, height, and head circumference. The ratios of intraventricular hemorrhage (IVH) and retinopathy of prematurity (ROP) were 8.7% and 3.1%, respectively. The incidence of congenital hypothyroidism was 2:341 in HRIs.Conclusions:Although some outcomes, such as ROP, improved in our study compared to similar studies, the findings indicate an impairment of the current follow-up processes and highlight the necessity to modify the current HRIF program. Ethically, we insist on integrating HRIF program in child health services to promote early childhood development.