Neonatal Follow-up Clinic Research Articles

Caregiver Experiences, Healthcare Provider Perspectives and Child Outcomes with Virtual Care in a Neonatal Neurodevelopmental Follow-Up Clinic: A Mixed-Methods Study

Background: Caregiver and healthcare provider perspectives of virtual care have not been explored in depth in the literature for neonatal follow-up clinics. Our objective was to evaluate caregivers’ and healthcare providers’ perspectives and compare neurodevelopmental outcomes of preterm neonates before and after implementing virtual care during the SARS-CoV-2 pandemic. Methods: Semi-structured interviews were conducted with families and healthcare providers, designed and analyzed using phenomenological qualitative methods. A retrospective cohort study was conducted to evaluate and compare neurodevelopmental characteristics of two preterm cohorts, one before (“in-person”) and after (“virtual”) virtual care. Results: Three themes were identified: increased confidence in in-person assessments, adequate delivery of information using virtual platforms and a preference for specialized care through the neonatal follow-up clinic. A total of 252 infants born preterm, 104 infants in the in-person group and 148 infants in the virtual group, were included in the study. The adjusted odds ratio (aOR) of cerebral palsy was lower when virtual care was used compared to in-person assessments (aOR = 0.11, 95% CI 0.01–0.98) while the adjusted odds of cognitive delay measured by in-person standardized testing were higher (aOR = 2.78, 95% CI 1.25–6.19). Conclusions: Caregivers and healthcare providers prefer in-person assessments for comprehensive developmental support. It may be more challenging to detect subtle cognitive differences using caregiver-reported measures. Cerebral palsy may be missed when assessments are completed virtually.

Attendance in a Neonatal Follow-Up Program before and in the Time of COVID-19 Pandemic: A Mixed Prospective-Retrospective Observational Study.

Attendance to neonatal follow-up programs presents a significant factor associated with positive long-term outcomes of high-risk infants. Strategies to maximize participation benefit not only future interventions' effectiveness but also healthcare systems and society. While a number of studies have focused on attrition or loss to follow-up, no studies have focused on the contributive risk factors to abstaining from neonatal follow-up programs specifically during the COVID-19 pandemic. This study aims to reveal the main factors linked to non-compliance in a neonatal follow-up program of a tertiary hospital. In this ambidirectional observational study, data from 1137 high-risk neonates who participated in a hospital follow-up program were collected (573 before and 564 after the COVID-19 pandemic). The study sample was grouped to three groups: G1 (N = 831), who maintained participation in the program; G2 (N = 196), who discontinued; and G3 (N = 110), who never visited the outpatient clinics. Data were obtained from the hospital's Systems Applications and Products (SAP) Software and a structured questionnaire, answered by parents of newborns either discontinuing (G2) or not attending (G3) the follow-up program through a telephone contact. The most frequently reported reason for discontinuance before the pandemic onset was the parents' perception of no necessity to maintain participation (44.12%). During the COVID-19 pandemic, provider-related barriers to maintaining hospital access, inability to provide high-quality services (37.14%), and feelings of fear and insecurity (18.5%) emerged as factors for non-attendance. Citizenship and morbidity (respiratory distress syndrome, sepsis, necrotic enterocolitis, jaundice) acted as incentives to join the follow-up program during both study periods. Multiple regression analysis showed that multiple-gestation infants had higher odds of maintaining participation during the COVID-19 period (OR, 4.04; CI, 1.09-14.9). Understanding the potential impact of COVID-19 and the transformative changes in neonatal follow-up clinics is crucial for applying compliance strategies. Removing barriers to maintain family participation can lead to increased attendance rates.

Protective Effects of Early Neonatal Methylxanthine Treatment on Cognitive and Language Outcomes in Premature Infants with and without High-Risk Perinatal Factors.

Caffeine and theophylline are methylxanthines and nonselective adenosine antagonists commonly used to treat apnea of prematurity. Both human and animal data suggest that xanthines also have clinically important long-term neuroprotective effects in the presence of inflammation in the perinatal period as seen following hypoxic-ischemic brain insults. Moreover, these protective effects appear to be more robust when administered shortly (<48 h) after preterm birth. To evaluate the importance of the postdelivery therapeutic window, we collected and analyzed medical data from preterm infants meeting criteria (23-30 weeks' gestational age [GA]), born at the University of Connecticut Health Center (UCHC), and cared for at the UCHC/Connecticut Children's Medical Center (CCMC) NICU from 1991 to 2017 (n = 858). Eighteen-month follow-up data included cognitive and language scores from the Neonatal Neurodevelopmental Follow-Up Clinic records, with a retention of 81% of subjects (n = 696). Differences were analyzed via multivariate ANOVA and ANCOVA. Analyses showed that infants who received xanthine treatment within the first 48 h after preterm birth showed significantly better 18-month behavioral outcomes than those treated later than 48 h, despite a lack of a priori differences in GA, birth, or length of stay. The positive effect of early xanthine therapy was particularly robust for infants exposed prenatally to the inflammatory conditions of chorioamnionitis and/or preeclampsia. Current findings are consistent with human and animal data, showing that caffeine exerts protective effects, at least in part via attenuation of inflammation. Results add to the evidence supporting routine immediate prophylactic neuroprotective xanthine therapy (i.e., caffeine) in preterm infants. Findings also add important new evidence of the augmented value of caffeine for infants with inflammatory exposure due to mothers with preeclampsia or chorioamnionitis.

Neurodevelopmental Outcomes of Preterm Infants Born

This study aimed to determine neurodevelopmental outcomes of preterm infants born at <29 weeks' gestational age (GA) with bronchopulmonary dysplasia and pulmonary hypertension (BPD-PH) at 18 to 24 months' corrected age (CA). In this retrospective cohort study, preterm infants born at <29 weeks' GA between January 2016 and December 2019, admitted to level 3 neonatal intensive care units, who developed BPD and were evaluated at 18 to 24 months' CA in the neonatal follow-up clinics were included. We compared demographic characteristics and neurodevelopmental outcomes between the two groups: Group I: BPD with PH and Group II: BPD with no PH, using univariate and multivariate regression models. The primary outcome was a composite of death or neurodevelopmental impairment (NDI). NDI was defined as any Bayley-III score < 85 on one or more of the cognitive, motor, or language composite scores. Of 366 eligible infants, 116 (Group I [BPD-PH] =7, Group II [BPD with no PH] = 109) were lost to follow-up. Of the remaining 250 infants, 51 in Group I and 199 in Group II were followed at 18 to 24 months' CA. Group I and Group II had median (interquartile range [IQR]) birthweights of 705 (325) and 815 g (317; p = 0.003) and median GAs (IQR) were 25 (2) and 26 weeks (2; p = 0.015) respectively. Infants in the BPD-PH group (Group I) were more likely to have mortality or NDI (adjusted odds ratio: 3.82; bootstrap 95% confidence interval; 1.44-40.87). BPD-PH in infants born at <29 weeks' GA is associated with increased odds of the composite outcome of death or NDI at 18 to 24 months' CA. · Long-term neurodevelopmental follow-up of preterm infants born <29 weeks' GA.. · Association of neurodevelopmental outcomes with BPD-associated PH.. · Need for longitudinal follow-up of children with BPD-associated PH..

The effect of father's participation in newborn care during hospitalization on survival and attendance at follow-up clinics in a tertiary care facility

BackgroundThe traditional role of a man has been to provide protection and economic support to their families. This study examines the role of men on duration of hospitalization, neonatal survival, and follow-up attendance at a tertiary institution, south-west Nigeria. MethodsThe study is a prospective cohort study involving fathers whose babies were admitted to a neonatal unit. We compared the fathers' provision of kangaroo mothers' care, financial support, readiness to stand in for mother and any other support with the outcomes of duration of hospital care, neonatal survival, and follow-up clinic attendance. We report adjusted odds ratio and 95% confidence interval of the outcome's variables. ResultsOne eighty-eight of the 201 selected had complete dataset. The median age of the babies at admission was 1 day (IQR: 1, 5; range 1-28-days). The overall median duration of hospitalization was 6 days (range 0.4–56) days. The median and interquartile range (IQR) of neonates who received father support at admission was shorter 5 days (IQR: 3, 7) compared to 7 days (IQR: 4, 11) for those who did not (p = 0.006). The survival rate and clinic attendance for preterms whose fathers provided KMC did not reach significant level(p = 0.201). The father's financial support significantly affected neonatal survival and follow-up clinic attendance (P = <0.001). The father's willingness to care for infant while the mother rests was associated with survival (p = 0.023). On multivariable logistic regression, infants whose fathers provided financial support had 27.8 (aOR: 27.778, 95% CI: 7.353–100.0) odds of survival and 6.155 (2.205–17.182) odds of clinic follow-up compared to those without. Other support from fathers was 20.8 (95% CI 4.587–100) times more likely to attend clinic follow-up. ConclusionsFather participation in newborn care significantly improves clinic follow-up attendance, shortens hospital stays, and improved newborn survival. Family-centered-father-focused newborn-care, are required in tertiary nurseries.

Human milk banking acceptability among pregnant and nursing mothers in Southwest Nigeria.

Human milk bank is a sustainable source of donor human milk (DHM) which is an acceptable alternative to the mother's milk and it is not routinely available in Nigeria, a multi-ethnically diverse country.The study aimed to assess the willingness to donate or accept human milk among pregnant women and mothers attending the antenatal, immunization, outpatient, under-five, and neonatal follow-up clinics in selected health facilities in Ekiti State, Southwest Nigeria. A descriptive cross-sectional, mixed methods study design was used to collect data in selected health facilities in Ekiti State. Questionnaires and focus group discussions were used to collect quantitative and qualitative data respectively while data analysis was done using the IBM® Statistical Package for Social Science SPSS version 26® and thematic analysis respectively. Of the 798 respondents, 529 (66.3%) and 626 (78.4%) did not know about wet nursing or human milk banking (HMB) respectively and 139 (17.4%) were willing to donate their breastmilk for a stipend. In the focus group discussion, 50% had heard about wet nursing but none heard about HMB. Maternal educational level had a significant impact on their willingness to donate or accept DHM (p < 0.00). Wholesomeness, cultural, and religious biases were major reasons affecting HMB acceptability. Awareness and perception of HMB are poor. Appropriate information, education, and counselling on HMB are needed to drive the adoption and establishment of HMB in Nigeria.

Previous missed visits and independent risk of loss to follow-up in the high-risk neonatal follow-up clinic

BackgroundNeonatal intensive care unit (NICU) patients are at high risk for developmental delays. As a result, many are seen in neonatal follow-up (NFU) clinics. Disparities in NFU follow-up rates by social determinants of health exist. AimsDetermine how the number of missed visits (composed of patient-canceled visits and no-show visits) relates to risk of loss to follow-up in the NFU clinic. Study designRetrospective cohort study at a regional specialty center in the United States. Subjects262 patients born between January 1, 2014, and December 31, 2017, who were referred to the NFU clinic. Outcome measuresLogistic binomial regression was used to model risk ratio of loss to follow-up over two years, defined as not attending a recommended follow-up visit and not informing the clinic of a reason for discontinued care. ResultsOf 262 infants, 220 patients (84 %) were seen for at least one visit and 143 (65 %) completed follow-up. Younger maternal age, maternal smoking during pregnancy, maternal drug use during pregnancy, and public insurance were all associated with missing more visits. For each additional missed visit, the risk of loss to follow-up was 1.73 times higher unadjusted (95 % CI: 1.33, 2.26) and 1.81 times higher (95 % CI: 1.36, 2.40) after adjusting for confounders. The risk ratio of loss to follow-up for no-show visits was three times higher than that for patient-canceled visits. ConclusionsEach missed visit was independently associated with higher risk of loss to follow-up from NFU clinic, even after adjusting for other risk factors.

0791 The Association of Sleep with Developmental and Behavioral Factors in Premature Infants

Abstract Introduction Children with neurodevelopmental conditions often experience sleep problems. Whereas sleep is a predictor of behavioral outcomes in children, there is limited evidence regarding sleep as an indicator of neurodevelopmental concerns. This study examined the prevalence of sleep issues and neurodevelopmental conditions in children with a history of prematurity, as well as the role of sleep as a potential indicator for future developmental and behavioral concerns. Methods Electronic health records of 57 young children (M = 31.9 gestational weeks, range = 23 to 40 weeks; 35.1% girls) presenting to a neonatal follow-up clinic were reviewed. Caregivers completed the Brief Infant Sleep Questionnaire (BISQ-R) between 6-16 corrected months (Mage = 11.6 mos) and then completed the Modified Checklist for Autism in Toddlers (M-CHAT) between 16-26 corrected months (Mage = 20.9 mos). Caregivers also completed the Survey of Wellbeing of Young Children (SWYC; n = 56; Mage = 20.9 mos) and the Brief Infant-Toddler Social and Emotional Assessment (BITSEA; n = 32; Mage = 17.4 mos). Results Approximately one-quarter (26.3%) of subjects had a caregiver-perceived child sleep problem at ages 6-16 corrected months. A total of 40.4% of children had clinically significant autism concerns on the M-CHAT and 67.9% had clinically significant concerns on the SWYC. Subsequent caregiver ratings showed that 25.0% of children exhibited challenging behaviors and 34.4% lower social-emotional competency on the BITSEA. Children who demonstrated clinically significant autism risk on the M-CHAT were more likely to have a prior caregiver-identified child sleep problem. Those who later failed the M-CHAT also had increased night waking frequency (2.43 vs 1.82 wakings) earlier in development. Logistic regression indicated that caregiver-identified sleep problems significantly predicted subsequent challenging behaviors on the BITSEA but not later neurodevelopmental concerns on the SWYC or social-emotional competencies on the BITSEA. Conclusion These pilot data suggest that a caregiver-identified child sleep problem at age 6-16 months corrected is linked to more frequent challenging child behaviors in toddlerhood (16-26 corrected months). Caregiver-identified child sleep problems and more night wakings also predicted later neurodevelopmental concerns. Sleep problems in premature infants may thus be an early indication of later behavioral and neurodevelopmental issues. Support (if any)

Ranking Future Outcomes Most Important to Parents of Children with Bronchopulmonary Dysplasia

To assess which potential future outcomes are most important to parents of children with bronchopulmonary dysplasia, a disease that affects future respiratory, medical, and developmental outcomes for children born preterm. We recruited parents from 2 children's hospitals' neonatal follow-up clinics and elicited their importance rating for 20 different potential future outcomes associated with bronchopulmonary dysplasia. These outcomes were identified and selected through a literature review and discussions with panels of parents and clinician stakeholders, via a discrete choice experiment. One hundred and 5 parents participated. Overall, parents ranked "Will my child be more vulnerable to other problems because of having lung disease?" as the most important outcome, with other respiratory health related outcomes also highly ranked. Outcomes related to child development and effects on the family were among the lowest ranked. Individually, parents rated outcomes differently, resulting in a broad distribution of importance scores for many of the outcomes. The overall rankings suggest that parents prioritize future outcomes related to physical health and safety. Notably, for guiding research, some top-rated outcomes are not traditionally measured in outcome studies. For guiding individual counseling, the broad distribution of importance scores for many outcomes highlights the extent to which parents differ in their prioritization of outcomes.

Lutheran Children’s Hospital Neonatal Follow-Up Clinic: Risk of Developmental Delay of Preterm Neonates as a Function of Gestational Birth Age

Background/Objectives:About 1 in 10 babies are born prematurely, a number that increased from previous years because more resources are available and fertility treatments are effective. Children born prematurely have a higher risk of developmental delays that are associated physically, socially, linguistically, and neurodevelopmentally. With these delays being commonly associated with preterm infants, there is the need to continuously study the longitudinal effects caused by being born prematurely. Our objectives include creating a more comprehensive care plan, comparing gestational age with developmental delay levels, and noting correlations between delays and their respective cohort. We hypothesis the more premature the child was born, the higher the likelihood of developmental delay(s).&#x0D; Methods:Two main tests were used to look for a correlation between the delay or lack of a delay with the child’s adjusted age. TIMP, Test of Infant Motor Performance, was used at two different age intervals to measure infant motor capacity. The ASQ, Ages and Stages Questionnaire, was used to screen several different developmental areas of concern, including social and behavioral abilities.&#x0D; Results:The data shows the developmental delay decreasing over time in all preterm cohorts with an exception being the late preterm cohort, likely due to its small sample size. The Chi-square test is not significant for the TIMP1 and TIMP2 comparisons of preterm cohorts. The ASQ data sets did not have a clear consensus of data.&#x0D; Conclusions:There is an increase of developmental delay in neonatal infants in comparison to the standard developmental milestones. A positive finding is that there is an overall decrease in developmental delay as the child progresses in age.&#x0D; Potential Impact: This research may promote other hospitals to implement a NFC for patient care and research considerations.

Reading to the Preterm Infant: Parent Perspectives on Barriers and Facilitators.

To describe parent-reported barriers and facilitators to reading to preterm-born infants, both in the neonatal intensive care unit (NICU) and at home. We hypothesized that families of preterm infants face unique barriers previously not described in the literature, and that understanding barriers from the parent perspective will uncover strategies for improving the NICU environment and cognitive home environment and allow refinement of current reading programs. We performed a qualitative study of parents of 0 to 12 month corrected age infants presenting to neonatal follow-up clinic. Infants were born <33 weeks gestational age or with birth weight ≤1500 grams. Parents completed a semistructured interview about reading practices. Answers to open-ended questions were coded to highlight key themes. We reached thematic saturation after interviewing 23 parents of 28 infants. Parent-generated items about barriers and facilitators to reading in the NICU and at home were each coded into 4 themes. Competing responsibilities and believing that reading was developmentally inappropriate were 2 shared themes for barriers to reading in both the NICU and home environment. Support people and understanding developmental impact were 2 shared themes for facilitators to reading in both the NICU and home environment. This qualitative work elucidates new targets for novel programs intended to support cognitive development of high-risk preterm infants. Addressing the unique, parent-reported barriers that we have identified and supporting adoption of the facilitators could increase word exposure for preterm infants, starting in the NICU and continuing at home.

27 Neurodevelopmental Outcomes of Preterm Infants Born &amp;lt;29 weeks with Bronchopulmonary Dysplasia Associated Pulmonary Hypertension: A Multicenter Study

Abstract Background More than 1 in 4 preterm infants with bronchopulmonary dysplasia (BPD) develop BPD-associated pulmonary hypertension (BPD-PH) that is associated with significant morbidity. Data regarding neurodevelopmental outcomes with BPD-PH in preterm infants are lacking. Objectives To determine neurodevelopmental outcomes of preterm infants born &amp;lt; 29 weeks gestational age (GA) with BPD associated pulmonary hypertension at 18 to 24 months corrected gestational age (CGA). Design/Methods In this retrospective cohort study, preterm infants born &amp;lt; 29 weeks GA between January 2016 and December 2019 at level 3 Neonatal Intensive Care Units at Foothills Hospital in Calgary and the University of Texas Medical Branch (UTMB) in Galveston, who were evaluated at 18-24 months CGA in the neonatal follow-up clinics were included. We compared demographic factors, neurodevelopmental status including Bayley-III scores and sensory impairments between the two groups based on the presence of PH at 36 weeks CGA: Group I: BPD with PH and Group II: BPD without PH, using univariate and multivariable regression models. The primary outcome was a composite of death or neurodevelopmental impairments (NDI). NDI was defined as any cerebral palsy (GMFCS≥1), Bayley-III score &amp;lt; 85 on one or more of the cognitive, motor, or language composite scores, sensorineural or mixed hearing impairment or unilateral or bilateral visual impairment. Results Of 372 eligible infants, 118 (Group I [BPD-PH] =7, Group II [BPD with no PH] =111) were lost to follow up. Of the remaining 254 infants, 52 in Group I and 202 in Group II were followed at 18-24 months CGA. Group I and Group II had median (IQR) birth weight of 710g (323) and 815g (314) [p=0.004] and median gestational ages (IQR) were 25 weeks (2) and 26 weeks (2) [p=0.020], respectively . Rates of associated impairments are shown in Figure 1. Infants in BPD-PH group (Group I) were more likely to have mortality or NDI (adjusted Odds Ratio [aOR] 3.82; 95% CI: 1.17-12.41) (Table 1). Conclusion BPD-PH in preterm infants born &amp;lt; 29 weeks GA is associated with increased odds of the composite outcome of death or neurodevelopmental impairment and language delay at 18-24 months CGA.

29 Maternal overweight and obesity’s impact on long-term neurodevelopmental outcomes in premature infants (&amp;lt;29 weeks) at 18-24 months corrected age

Abstract Background Increasing rates of obesity are of growing concern to maternal and child health as mothers with obesity are at risk of pregnancy complications. Infants of mothers with overweight/obese pre-pregnancy body mass index (BMI) may also be at risk of significant neurodevelopmental disorders. The relationship between maternal pre-pregnancy BMI and neurodevelopmental outcomes in preterm infants is not yet clearly defined. Objectives To determine the association of pre-pregnancy BMI of mothers of infants born &amp;lt;29 weeks gestational age (GA) and neurodevelopmental impairment (NDI) at 18-24 months corrected age (CA). Design/Methods Preterm infants born &amp;lt;29 weeks GA between January 2005 and December 2015 evaluated in the neonatal follow-up clinic at 18-24 months CA were included. Demographic characteristics as well as neurodevelopmental status including Bayley-III cognitive, language, and motor scores and sensory impairments were compared between three groups based on maternal pre-pregnancy BMI (BMI1 [18.5-24.9 kg/m2] vs. BMI2 [25-29.9 kg/m2] vs. BMI3 [≥30 kg/m2]) using univariate and multivariable regression models. The primary outcome was a composite of death or NDI. NDI was defined as the presence of Bayley-III &amp;lt;85 on one or more of the cognitive, motor, or language composite scores, any cerebral palsy (GMFCS ≥1), sensorineural or mixed hearing impairment, or unilateral or bilateral visual impairment. Results Of 771 eligible infants, 53 not seen in the follow-up clinic and 21 born to mothers with BMI &amp;lt;18.5 kg/m2 were excluded. Of the remaining 697 participants, 315 (45%) infants were in BMI1, 235 (34%) in BMI2, and 147 (21%) in BMI3 groups. Infants in BMI1, BMI2, and BMI3 groups had mean (SD) birth weight of 897 (231), 854 (208), and 867 (234) grams and median GA (IQR) of 27 (3), 26 (2), and 27 (3) weeks respectively. Rates of associated impairments are shown in Figure 1. The odds of a composite of death or NDI in BMI2 vs. BMI1 and BMI3 vs BMI1 groups were 1.33 (95%CI 0.86-2.06) and 0.76 (95%CI 0.47-1.22) respectively (Table 1). Infants born to mothers in the BMI2 group had twice the odds of scoring &amp;lt;85 on the Bayley-III language composite than those in BMI1 (adjusted odds ratio 2.06 [95% CI; 1.28-3.32]). Conclusion Pre-pregnancy body mass index was not associated with death or neurodevelopmental impairment in very preterm infants at 18-24 months corrected age. However, infants born to mothers who were overweight were more likely to have lower language scores.

Incidence and risk factors for autism spectrum disorder among infants born

This study was aimed to assess the incidence of and risk factors for autism spectrum disorder (ASD) among preterm infants born <29 weeks' gestational age (GA). A retrospective cohort study of infants born <29 weeks' GA admitted to two tertiary neonatal intensive care units (2009 to 2017) and followed ≥18 months corrected age (CA) at a neonatal follow-up clinic. The primary outcome was ASD, diagnosed using standardized testing or provisional diagnosis at ≥18 months CA. Patient data and 18-month CA developmental outcomes were obtained from the local Canadian Neonatal Follow Up Network database and chart review. Stepwise logistic regression assessed factors associated with ASD. Among 300 eligible infants, 26 (8.7%) were diagnosed with confirmed and 21 (7.0%) with provisional ASD for a combined incidence of 15.7% (95% confidence interval [CI] 11.7 to 20.3). The mean follow-up duration was 3.9 ± 1.4 years and the mean age of diagnosis was 3.7 ± 1.5 years. Male sex (adjusted odds ratio [aOR] 4.63, 95% CI 2.12 to 10.10), small for gestational age status (aOR 3.03, 95% CI 1.02 to 9.01), maternal age ≥35 years at delivery (aOR 2.22, 95% CI 1.08 to 4.57) and smoking during pregnancy (aOR 5.67, 95% CI 1.86 to 17.29) were significantly associated with ASD. Among ASD infants with a complete 18-month CA developmental assessment, 46% (19/41) had no neurodevelopmental impairment (Bayley-III<70, deafness, blindness, or cerebral palsy). ASD is common among infants born <29 weeks' GA and possibly associated with identified risk factors. Such findings emphasize the importance of ASD evaluation among infants <29 weeks' GA and for continued reporting of developmental outcomes beyond 18-months of corrected age.

The AIMS home-video method: parental experiences and appraisal for use in neonatal follow-up clinics

BackgroundIn The Netherlands, prematurely born infants and their parents are offered regular developmental check-ups in a hospital setting. In line with providing healthcare at distance, the use of video footage showing the infant’s behavior and movements, taken by parents at home and assessed by professionals online, might be a fruitful future practice. The focus of this study was to gain insight into parental experiences with the Alberta Infant Motor Scale home-video method and their appraisal of its applicability for use in an outpatient neonatal follow-up clinic.MethodA qualitative descriptive study among parents of healthy extremely or very premature infants (GA 26.2–31.5 weeks) participating in a longitudinal study of motor development between 3–18 months corrected age. Ten semi-structured interviews were conducted and transcribed verbatim. Data was analyzed independently. Inductive content analysis was performed following the process of the AIMS home-video method.ResultsParents appraised the AIMS home-video method as manageable and fun to do. Instructions, instruction film, and checklists were clear. Transferring the video footage from their phone to their computer and uploading it to the web portal was sometimes time-consuming. Parents gained a better awareness of their infant’s motor development and found the provided feedback a confirmation of what they already thought about their infant’s development and was reassuring that their child was doing well. First-time parents seemed more uncertain and had a greater need for information about (motor) development, but on the other hand, also had confidence in their child.All parents thought that home-videos can be an addition to follow-up visits, but cannot replace (all) visits. It may be an opportunity to reduce the frequency of hospital visits, while still having their infant monitored.ConclusionParents appraised the AIMS home-video method positively and are of the opinion that home-videos can be of added value in monitoring infants at risk in neonatal follow-up additional to hospital visits. In future research a user-friendly application and/or platform to exchange video footage safely between parents and professionals should be developed with all possible stakeholders involved and implementation should be explored.

EzPreemie study protocol: a randomised controlled factorial trial testing web-based parent training and coaching with parents of children born very preterm

IntroductionChildren born very preterm (VPT; gestational age <32 weeks) are twice as likely to demonstrate behaviour problems such as aggression, non-compliance, temper tantrums and irritability compared with their term-born peers....

Improving Blood Pressure Screening in Neonatal Follow-up Clinic: A Quality Improvement Initiative.

Introduction:The American Academy of Pediatrics recommends blood pressure screening at every health care encounter in children younger than 3 years if they have a history of prematurity or other neonatal complications requiring intensive care because these children have an increased risk for hypertension.Methods:A multidisciplinary team conducted a quality improvement initiative to improve blood pressure screening at a single-center outpatient neonatal follow-up clinic. We developed a focused intervention program including a standardized blood pressure measurement protocol, staff training and education, and streamlined documentation. We conducted two Plan-Do-Study-Act cycles from November 2019 to January 2021. The outcome measure was the percentage of patients with a blood pressure measurement. Process measures included the percentage of medical assistants educated on the new protocol, percentage of patients 3 years, and younger old with the first blood pressure measurement taken from the right arm, and the percentage of patients 1 year and younger with 3 documented blood pressures. The balancing measure was staff satisfaction with time to obtain vital signs. We used statistical process control charts and Wilcoxon rank-sum test.Results:At baseline, only 15.3% of patients had documented blood pressure. During the 10-month intervention period, there were 954 patient visits. Overall, blood pressure measurement increased to 54.7% with study interventions. The balancing measure was not negatively impacted.Conclusions:After implementing a program of focused interventions, we substantially improved the frequency of blood pressure measurements and increased adherence to American Academy of Pediatrics screening guidelines. Improved blood pressure screening allows us to identify and evaluate at-risk infants after hospital discharge.

Parental perspective on important health outcomes of extremely preterm infants

Background and objectiveNeonatal outcome research and clinical follow-up principally focus on neurodevelopmental impairment (NDI) after extremely preterm birth, as defined by the scientific community, without parental input. This survey aimed...

72 Identifying Perinatal and Neonatal Factors Associated with Autism Spectrum Disorder among Preterm Infants Born &lt; 29 Weeks’ Gestation

Abstract Primary Subject area Neonatal-Perinatal Medicine Background Preterm infants born &amp;lt;29 weeks’ gestational age (GA) are at risk for autism spectrum disorder (ASD), typically diagnosed at age &amp;gt;2 years. Perinatal and neonatal factors, including interventions and morbidities during neonatal intensive care unit admission, may contribute to the risk of ASD among these infants. Objectives We aimed to assess the incidence of and risk factors for, ASD among preterm infants born &amp;lt; 29 weeks’ GA. Design/Methods &amp;lt;29 weeks’ GA admitted 2009-2017 to two tertiary NICUs and followed ≥18 months at the Neonatal Follow-Up Clinic. Primary outcome was ASD defined as a confirmed diagnosis using standardized testing or suspected diagnosis at &amp;gt;18 months of corrected age. Patient data and 18-month developmental outcomes were obtained from the local Canadian Neonatal Follow Up Network database and from chart review. Stepwise logistic regression was used to identify significant perinatal, neonatal, and socio-economic factors associated with ASD. Results Among 300 eligible infants, 47 (15.7%) developed ASD (Figure 1, Table 1). Mean follow-up duration was 3.9 ± 1.4 years and mean age at diagnosis was 3.7 ± 1.5 years. Male sex (adjusted odds ratio [aOR] 4.63, 95% CI 2.12, 10.10), small for gestational age status (aOR 3.03, 95% CI 1.02, 9.01), maternal age ≥ 35 years at delivery (aOR 2.22, 95% CI 1.08, 4.57), and tobacco use in utero (aOR 5.67, 95% CI 1.86, 17.29) were significantly associated with ASD. Major neonatal morbidities (retinopathy of prematurity, bronchopulmonary dysplasia, necrotizing enterocolitis, late-onset sepsis, severe neurological injury) were not associated with ASD. Among infants with a complete 18-month corrected age developmental assessment and later diagnosed with ASD, 46% (19/41) did not have significant neurodevelopment impairment (Bayley-III &amp;lt; 70, deafness, blindness, or cerebral palsy). Conclusion ASD is a significant morbidity among infants born &amp;lt; 29 weeks’ GA. ASD was associated with infant and prenatal risk factors but not with neonatal morbidities or socio-economic factors. These findings emphasize the need for ASD evaluation among preterm infants &amp;lt; 29 weeks and for reporting developmental outcomes beyond 18-months corrected age.

75 Parental perspective about the health and development of their extremely preterm child

Abstract Primary Subject area Neonatal-Perinatal Medicine Background Preterm birth outcome studies and clinical follow-up have traditionally focused on neurodevelopment. We previously showed in a selected sample of parents that they also valued other types of outcomes. Objectives This study aimed to validate these findings in a more diverse cohort by examining parental perspectives about the positive and negative aspects of their very preterm child’s health and development in relation to level of neurodevelopment impairment (NDI). Design/Methods Parents of children born &amp;lt; 29 weeks gestational age in 2016-2018 and seen at two Canadian neonatal follow-up clinics were invited to complete an online survey about their level of agreement with statements about their child’s health, development, and well-being. Parental responses in relation to their child’s level of NDI were examined using Kruskal-Wallis and chi-square for trends tests. Results 199 parental responses were obtained for 165 children (65% of eligible children). Of these children, 52%, 27% and 21% had, respectively, no, mild to moderate, and severe NDI. Development was the most common source of concerns (49%), followed by the child’s future (35%), and physical health (35%). Parents of children with severe NDI were more likely to express concerns than those with mild to moderate or no NDI. Parents rated their child’s health relatively high with a median score of 8/10 (range 3-10). Children with no NDI were given higher scores than those with NDI (p = 0.004). Regardless of level of NDI, almost all parents agreed with their child being happy (p = 1.000) and having a positive personality (p = 0.207). Figure 1 shows that parental concerns increased with level of NDI. Conclusion Parents of preterm children have a balanced perspective on their child’s outcome. Integrating their views when developing core sets of important outcomes for neonatal follow-up is critical.