The newborn behavioural observations system: A relationship-building intervention to support families in the neonatal intensive care unit.

AIM: Relationship-based interventions for neonatal intensive care unit families have potential to improve parent and infant outcomes; yet, their implementation has been modest within systems of care for high-risk newborns. The purpose of this paper is to describe a relationship-building intervention, the newborn behavioural observation system, summarise the evidence supporting its use, and address its clinical application for high-risk parent-infant dyads in the neonatal intensive care unit. METHODS: We summarise the extant literature describing the use of the newborn behavioural observation system in high-risk populations. RESULTS: While the body of literature supporting the use of the newborn behavioural observation system is modest, several randomised controlled studies have highlighted statistically significant and clinically meaningful gains in infant development and parental mental health. In these studies, the intervention was often integrated into existing systems of care and included high-risk parent-infant dyads. CONCLUSION: The newborn behavioural observation system is a promising intervention designed to support the early challenges of high-risk infants and their parents. Future research should examine its effects in diverse neonatal intensive care unit populations and professionals, strive for continuity of care from inpatient to post-discharge follow-up and developmental support services, and include more longitudinal studies.

An analysis of interagency collaboration: Lessons learned from Colorado's early intervention program.

INTRODUCTION: The purpose of this study was to describe interagency collaboration in Part C Early Intervention (EI) programs. METHODS: Between 18 April and 9 May 2022, 48 EI service coordinators (SCs) from 14 programs in one state completed adapted versions of the Interagency Collaboration Activities Scale (IACAS) and Relational Coordination Survey (RCS). Assessing perceptions of shared structures (IACAS) and coordination quality (RCS), these combined measures summarized interagency collaboration with 11 organizations. Mean (SD) survey responses were estimated and ranked. RESULTS: Sample SCs represent a breadth of professional disciples and vary substantially in their current and desired collaborations. The quantity of SCs collaborating with organizations ranged from 0% to 98%. Nearly all (98%) reported collaborating with the school districts, few (15%) reported collaborating with insurance, and none reported collaborating with Supplemental Nutrition Assistance Program or Special Supplemental Nutrition Program for Women, Infants, and Children. The majority of SCs expressed desire to increase their collaborations with most of the listed organizations. The perceived quality of collaborations varied substantially at both individual and organizational levels. When comparing SC perceptions of shared structures and coordination quality, SCs reported more favourable collaborations with school districts (IACAS rank: first and RCS rank: first) and less favourable collaborations with insurance (IACAS rank: ninth and RCS rank: seventh). Some organizations rankings varied across both scales, including pediatric primary care (IACAS rank: third and RCS rank: eighth) and hospitals (IACAS rank: sixth and RCS rank: second). Overall, SCs reported low perceived existence of shared structures while coordination quality varied by organization. Opportunities for collaborative growth were identified. DISCUSSION: Despite its importance and required implementation in EI, perceptions of interagency collaboration varied substantially within and between EI programs. There is a suggested need to increase the quantity of SCs that collaborate and identified opportunities to increase the quality of collaborations that already exist.

Cross-sector Collaboration Between Public Health, Healthcare and Social Services Improves Retention: Findings from a Nurse Home Visiting Program.

The study aimed to examine the association between cross-sector collaboration in Nurse-Family Partnership (NFP), a model home visiting program, and participant retention. We used the 2018 NFP Collaboration Survey that measured agency-level collaboration, operationalized as relational coordination and structural integration, among nine community provider types (including obstetrics care, substance use treatment, child welfare). This dataset was linked to 2014-2018 NFP program implementation data (n = 36,900). We used random-intercept models with nurse-level random effects to examine the associations between provider-specific collaborations and participant retention adjusting for client, nurse, and agency characteristics. The adjusted models suggest that stronger relational coordination between nurses and substance use treatment providers (OR:1.177, 95% CI: 1.09-1.26) and greater structural integration with child welfare (OR: 1.062, CI: 1.04-1.09) were positively associated with participant retention at birth. Stronger structural integration between other home visiting programs and supplemental nutrition for women, infants, and children was negatively associated with participant retention at birth (OR: 0.985, CI: 0.97-0.99). Structural integration with child welfare remained significantly associated with participant retention at 12-month postpartum (OR: 1.032, CI: 1.01-1.05). In terms of client-level characteristics, clients who were unmarried, African-American, or visited by nurses who ceased NFP employment prior to their infant's birth were more likely to drop out of the NFP program. Older clients and high school graduates were more likely to remain in NFP. Visits by a nurse with a master's degree, agency rurality, and healthcare systems that implement the program were associated with participant retention. Cross-sector collaboration in a home visiting setting that bridges healthcare and addresses social determinants of health has potential to improve participant retention. This study sets the groundwork for future research to explore the implications of collaborative activities between preventive services and community providers.

Medicaid Payment For Postpartum Long-Acting Reversible Contraception Prompts More Equitable Use.

To increase access to highly effective contraception and improve reproductive autonomy, a growing number of state Medicaid programs pay for the provision of immediate postpartum long-acting reversible contraception (LARC) in addition to providing a global payment for maternity care. Using Pregnancy Risk Assessment Monitoring System data, we examined postpartum LARC use both overall and by race and ethnicity among respondents with Medicaid-paid births during the period 2012-18 in eight states that implemented immediate postpartum LARC payment and eight states without it. Using a quasi-experimental difference-in-differences design, we found that the policy resulted in an overall 2.1-percentage-point increase in postpartum LARC use. Our triple-differences analysis found no significant change among White mothers and a 3.7-percentage-point increase in use among Black mothers compared with White mothers. Additional research is needed to determine whether this increase was aligned with patients' preferences and whether hospitals' immediate postpartum LARC policies and practices take a patient-centered approach that supports reproductive autonomy and equity.

Implementing an Electronic Patient-Reported Outcome and Decision Support Tool in Early Intervention.

OBJECTIVE: The aim of the study is to identify and prioritize early intervention (EI) stakeholders' perspectives of supports and barriers to implementing the Young Children's Participation and Environment Measure (YC-PEM), an electronic patient-reported outcome (e-PRO) tool, for scaling its implementation across multiple local and state EI programs. METHODS: An explanatory sequential (quan > QUAL) mixed-methods study was conducted with EI families (n = 6), service coordinators (n = 9), and program leadership (n = 7). Semi-structured interviews and focus groups were used to share select quantitative pragmatic trial results (e.g., percentages for perceived helpfulness of implementation strategies) and elicit stakeholder perspectives to contextualize these results. Three study staff deductively coded transcripts to constructs in the Consolidated Framework for Implementation Research (CFIR). Data within CFIR constructs were inductively analyzed to generate themes that were rated by national early childhood advisors for their relevance to longer term implementation. RESULTS: All three stakeholder groups (i.e., families, service coordinators, program leadership) identified thematic supports and barriers across multiple constructs within each of four CFIR domains: (1) Six themes for "intervention characteristics," (2) Six themes for "process," (3) three themes for "inner setting," and (4) four themes for "outer setting." For example, all stakeholder groups described the value of the YC-PEM e-PRO in forging connections and eliciting meaningful information about family priorities for efficient service plan development ("intervention characteristics"). Stakeholders prioritized reaching families with diverse linguistic preferences and user navigation needs, further tailoring its interface with automated data capture and exchange processes ("process"); and fostering a positive implementation climate ("inner setting"). Service coordinators and program leadership further articulated the value of YC-PEM e-PRO results for improving EI access ("outer setting"). CONCLUSION: Results demonstrate the YC-PEM e-PRO is an evidence-based intervention that is viable for implementation. Optimizations to its interface are needed before undertaking hybrid type-2 and 3 multisite trials to test these implementation strategies across state and local EI programs with electronic data capture capabilities and diverse levels of organizational readiness and resources for implementation.

Inpatient Physical Therapy After Orthopedic Lower Extremity Surgery in Children With Cerebral Palsy.

PURPOSE: To characterize and examine the variability in receipt of inpatient (IP) physical therapy after lower extremity (LE) orthopedic surgery for individuals with cerebral palsy (CP) across hospital-level (region, bed size) and individual characteristics (gender, age, race/ethnicity, insurance type, technology dependency, and surgical burden). METHODS: We retrospectively analyzed physical therapy billing data of children with CP who had LE orthopedic surgery from October 1, 2015, through September 30, 2017, from the Pediatric Health Information Services (PHIS) database. RESULTS: Seventy-five percent of individuals received IP physical therapy during the hospital stay. Individuals from the South and West and those who were technology dependent were less likely to receive IP therapy. Those at large hospitals, aged 11 to 14 years, and with a high surgical burden were more likely to receive therapy. CONCLUSIONS: Results provide a starting point for future research on the discrepancies of acute physical therapy services in children diagnosed with CP. (Supplemental digital content video abstract available at: http://links.lww.com/PPT/A420).

Impact of State Prioritization of Safe Infant Sleep Programs on Supine Sleep Positioning for Non-Hispanic White and Non-Hispanic Black Infants.

OBJECTIVE: Investigate whether safe infant sleep prioritization by states through the Title V Maternal and Child Block Grant in 2010 differentially impacted maternal report of supine sleep positioning (SSP) for Non-Hispanic White (NHW) and Non-Hispanic Black (NHB) U.S.-born infants. STUDY DESIGN: We analyzed retrospective cross-sectional data from the Pregnancy Risk Assessment Monitoring System (PRAMS) from 2005 to 2015 from 4 states: WV and OK (Intervention) and AR and UT (Control). PRAMS is a population-based surveillance system of maternal perinatal experiences which is linked to infant birth certificates. Piece-wise survey linear regression models were used to estimate the difference in the change in slopes of SSP percents in the pre- (2005-2009) and post- (2011-2015) periods, controlling for maternal and infant characteristics. Models were also stratified by race/ethnicity. RESULTS: From 2005 to 2015, for NHW infants, SSP improved from 61.5% and 70.2% to 82.8% and 82.3% for intervention and control states, respectively. For NHB infants, SSP improved from 30.6% and 26.5% to 64.5% and 53.1% for intervention and control states, respectively. After adjustment for maternal characteristics, there was no difference in the rate of SSP change from the pre- to post- intervention periods for either NHW or NHB infants in intervention or control groups. CONCLUSION: Compared with control states that did not prioritize safe infant sleep in their 2010 Title V Block Grant needs assessment, intervention states experienced no difference in SSP improvement rates for NHW and NHB infants. While SSP increased for all infants during the study period, there was no causal relationship between states' prioritization of safe infant sleep and SSP improvement. More targeted approaches may be needed to reduce the racial/ethnic disparity in SSP and reduce the risk for sleep-associated infant death. KEY POINTS: · Supine sleep positioning improved for Black and White infants in the U.S.. · State prioritization of safe infant sleep did not directly impact SSP for NHB or NHW infants.. · More targeted approaches may be needed to reduce racial/ethnic disparities in safe sleep practices.

Effectiveness and scalability of an electronic patient-reported outcome measure and decision support tool for family-centred and participation-focused early intervention: PROSPECT hybrid type 1 trial protocol.

INTRODUCTION: Early intervention (EI) endorses family-centred and participation-focused services, but there remain insufficient options for systematically enacting this service approach. The Young Children's Participation and Environment Measure electronic patient-reported outcome (YC-PEM e-PRO) is an evidence-based measure for caregivers that enables family-centred services in EI. The Parent-Reported Outcomes for Strengthening Partnership within the Early Intervention Care Team (PROSPECT) is a community-based pragmatic trial examining the effectiveness of implementing the YC-PEM e-PRO measure and decision support tool as an option for use within routine EI care, on service quality and child outcomes (aim 1). Following trial completion, we will characterise stakeholder perspectives of facilitators and barriers to its implementation across multiple EI programmes (aim 2). METHODS AND ANALYSIS: This study employs a hybrid type 1 effectiveness-implementation study design. For aim 1, we aim to enrol 223 caregivers of children with or at risk for developmental disabilities or delays aged 0-3 years old that have accessed EI services for three or more months from one EI programme in the Denver Metro catchment of Colorado. Participants will be invited to enrol for 12 months, beginning at the time of their child's annual evaluation of progress. Participants will be randomised using a cluster-randomised design at the EI service coordinator level. Both groups will complete baseline testing and follow-up assessment at 1, 6 and 12 months. A generalised linear mixed model will be fitted for each outcome of interest, with group, time and their interactions as primary fixed effects, and adjusting for child age and condition severity as secondary fixed effects. For aim 2, we will conduct focus groups with EI stakeholders (families in the intervention group, service coordinators and other service providers in the EI programme, and programme leadership) which will be analysed thematically to explain aim 1 results and identify supports and remaining barriers to its broader implementation in multiple EI programmes. ETHICS AND DISSEMINATION: This study has been approved by the institutional review boards at the University of Illinois at Chicago (2020-0555) and University of Colorado (20-2380). An active dissemination plan will ensure that findings have maximum reach for research and practice. TRIAL REGISTRATION NUMBER: NCT04562038.

A qualitative study of effective collaboration among nurse home visitors, healthcare providers and community support services in the United States.

Collaboration across sectors is needed to improve community health, but little is known about collaborative activities among public health prevention programs. Using the Nurse-Family Partnership® (NFP) home visiting program as context, this qualitative study aimed to describe effective collaboration among nurse home visitors, healthcare providers and community support services to serve families experiencing social and economic adversities. We used grounded theory to characterise collaboration with six purposively sampled NFP sites in the United States through in-depth interviews. We interviewed 73 participants between 2017 and 2019: 50 NFP staff, 18 healthcare providers and 5 other service providers. Interviews were recorded, transcribed, validated and analysed in NVivo 11. Validation steps included inter-coder consistency checks and expert review. Thematic memos were synthesised across sites. Most participants perceived collaboration to be important when serving families with complex needs, but substantial variation existed in the degree to which NFP nurses collaborate with providers dependent on provider type and community context. Factors that contributed to effective collaboration were relational in nature, including leadership commitment and provider champions, shared perceptions of trust, respect and value, and referral partnerships and outreach; organisational in terms of mission congruence between providers; and structural such as policy and system integration that facilitated data sharing and communication channels. These findings provide greater insights into effective cross-sector collaboration and care coordination for families experiencing adversities. Collaboration across sectors to promote health among families experiencing adversities requires intentional efforts by all inter-professional providers and continued commitment among all levels of leadership to coordinate services.

National survey of nurse home visitor collaboration with health care and social services.

OBJECTIVE: To assess the degree to which nurses in a national public health home visiting program collaborate with interprofessional providers to serve families experiencing adversity. DESIGN: A descriptive, cross-sectional survey measured collaborative practices between nurse home visitors, health care, and social service providers. A census of 263 nursing supervisors completed a web-based survey. MEASUREMENTS: The survey included the validated 7-item Relational Coordination Scale, adapted items from the Interagency Collaboration Activities Scale on shared resources, and items related to collaboration attitudes and beliefs. Data were analyzed with descriptive statistics. RESULTS: Relational coordination scores, which are relative measures, ranged from 1 to 5; highest with supplemental nutrition for Women, Infants & Children (M = 3.77) and early intervention (M = 3.44); and lowest with housing (M = 2.55). The greatest sharing of resources was with supplemental nutrition (sum = 12.95) and mental health providers (sum = 11.81), and least with housing (sum = 7.26); with a range of 1-30 where higher scores indicated greater resource-sharing. CONCLUSION: Home visiting nurses collaborate with interprofessional providers with variation in the degree of collaboration between agencies and by provider type within an agency. Collaboration was a function of two interrelated domains: interpersonal relationships supported by organizational and contextual factors at the systems-level.

Persistent Racial/Ethnic Disparities in Supine Sleep Positioning among US Preterm Infants, 2000-2015.

OBJECTIVE: To assess trends in racial disparity in supine sleep positioning (SSP) across racial/ethnic groups of infants born early preterm (Early preterm; <34 weeks) and late preterm (Late preterm; 34-36 weeks) from 2000 to 2015. STUDY DESIGN: We analyzed Pregnancy Risk Assessment Monitoring System data (a population-based perinatal surveillance system) from 16 US states from 2000 to 2015 (Weighted N = 1 020 986). Marginal prevalence of SSP by year was estimated for infants who were early preterm and late preterm, adjusting for maternal and infant characteristics. After stratifying infants who were early preterm and late preterm, we compared the aOR of SSP trends across racial/ethnic groups by testing the time-race interaction. RESULTS: From 2000 to 2015, Non-Hispanic Black infants had lower odds of SSP compared with Non-Hispanic White infants for early preterm (aOR 0.61; 95% CI 0.47-0.78) and late preterm (aOR 0.44; 95% CI 0.34-0.56) groups. For Hispanic infants, there was no statistically significant difference for either preterm group when compared with Non-Hispanic White infants. aOR of SSP increased (on average) annually by 10.0%, 7.3%, and 7.7%, respectively, in Non-Hispanic White, Non-Hispanic Black, and Hispanic early preterm infants and by 5.8%, 5.9%, and 4.8% among Non-Hispanic White, Non-Hispanic Black, and Hispanic late preterm infants. However, there were no significant between-group differences in annual changes (Early preterm: P = .11; Late preterm: P = .25). CONCLUSIONS: SSP increased for all racial/ethnic preterm groups from 2000 to 2015. However, the racial/ethnic disparity in SSP among early preterm and late preterm groups persists.

Patient Sharing and Health Care Utilization Among Young Adults With Congenital Heart Disease.

Transitions from pediatric to adult care by young adults with chronic conditions are fraught with challenges. Poor transitions lead to discontinuities of care that are avoidable with better communication between providers. We tested whether exposure to providers with sustained patient-sharing relationships resulted in fewer emergent admissions of young adults with congenital heart disease (CHD). Care transitions are particularly important for young adults with CHD. Though it is not possible to avoid planned admissions for scheduled procedures, emergency admissions are avoidable with proper care. We tested whether several different patient-sharing relationship measures influenced emergent admissions and found that compared with less severe CHD patients, those with severe CHD experienced a 4 to 10 percentage point decline in emergent admissions given a 5 percentage point increase in practice-level patient-sharing relationships. These results are consistent with our hypothesis that patient sharing improves communication and continuity of care across providers, especially for severe CHD patients.

A patient and public involvement workshop using visual art and priority setting to provide patients with a voice to describe quality and safety concerns: Vitamin B12 deficiency and pernicious anaemia.

BACKGROUND: Patient and public involvement and engagement (PPIE) is recognized as important for improved quality in health service provision and research. Vitamin B12 deficiency is one area where PPIE has potential to benefit patients, as patients often report sub-optimal care due to diagnostic delay, insufficient treatment and poor relationships with health professionals. OBJECTIVE: In an effort to engage an understudied patient population in health-care quality and safety discussions, and provide patients with an opportunity to have a voice, contribute to research priorities and express their current quality and safety concerns, we hosted a PPIE workshop. METHODS: One researcher (with lived experience) facilitated a one day workshop with 12 patients with varied demographics. The workshop had four components (a) one-to-one sessions with an artist, (b) quality and safety research/education priority setting, (c) comments on research proposals, and (d) development of a PPIE group for future research. RESULTS: All elements of the workshop elicited a number of quality and safety priorities for the group. Priority setting highlighted issues with interpretation of test results, symptom-based treatment, self-medication and relationship with primary care health-care professionals. One of the major safety issues highlighted in the visual art element was feeling ignored, silenced or not listened too by health-care professionals. DISCUSSION: Visual art methods to express experiences of health, and research priority setting tasks achieved the aim of providing patients with an opportunity to have a voice and express concerns about health-care quality and safety issues. The addition of visual art allowed patients to articulate emotions and impacts on everyday life associated with quality and safety. PATIENT OR PUBLIC CONTRIBUTION: A public contributor was involved in preparation of this manuscript. The event aimed to enable PPIE contribution in future research.

The effects of the Newborn Behavioral Observations (NBO) system in early intervention: A multisite randomized controlled trial.

The purpose of this pilot study was to evaluate the effect of an infant mental health intervention, the Newborn Behavioral Observations system (NBO), versus usual care (UC) on infant neurodevelopment and maternal depressive symptoms in early intervention (EI). This multisite randomized trial enrolled newborns into the NBO (n = 16) or UC group (n = 22) and followed them for 6 months. Outcome measures included the Battelle Developmental Inventory (BDI-2), Bayley Scales of Infants Development (BSID-III), and Center for Epidemiologic Studies Depression Scale (CES-D). The CES-D and BSID-III were collected at 3- and 6-months post EI entry and the BDI-2 was collected at EI entry and 6-months post-EI entry. We estimated group differences [95% CI], adjusting for program characteristics. At 6 months, the NBO group had greater gains in Communication (b = 1.0 [0.2, 1.8]), Self-Care (b = 2.0 [0.1, 3.9]), Perception and Concepts (b = 2.0 [0.4, 3.6]), and Attention and Memory (b = 3.0 [0.4, 6.0]) than the UC group. The NBO group also had greater decline in maternal postnatal depressive symptoms (b = -2.0 [-3.7, -0.3]) than the UC group. Infants receiving the NBO infant mental health intervention had greater gains in cognitive and adaptive functions at 6 months than infants receiving UC. Caregivers receiving NBO care had greater improvements in maternal depressive symptoms than caregivers receiving UC.

El propósito de este estudio piloto fue evaluar el efecto que una intervención de salud mental infantil, el sistema de Observación de Comportamiento del Recién Nacido (NBO), versus el cuidado usual (UC), tiene en el desarrollo neurológico del infante y los síntomas de depresión materna en la Temprana Intervención (EI). Este ensayo al azar de múltiples lugares inscribió a recién nacidos en el NBO (n = 16) o en el grupo UC (n = 22) y les dio seguimiento por 6 meses. Las medidas de los resultados incluyeron el Inventario Battelle del Desarrollo (BDI-2), las Escalas Bayley del Desarrollo de Infantes (BSID-III), y la Escala de Depresión del Centro para Estudios Epidemiológicos (CES-D). El CES-D y BSID-III fueron implementados a los 3 y 6 meses posteriores a la entrada en EI y el BDI-2 fue implementado al momento de entrar en EI y a los 6 meses posteriores a dicha entrada. Estimamos las diferencias de grupos [95% CI], con ajustes en cuanto a características del programa. A los 6 meses, el grupo NBO presentaba mayores logros en Comunicación (b = 1.0 [0.2, 1.8]), Autocuidado (b = 2.0 [0.1, 3.9]), Percepción y Conceptos (b = 2.0 [0.4, 3.6]) y Atención y Memoria (b = 3.0 [0.4, 6.0]) que el grupo de UC. El grupo NBO también tuvo una mayor baja en síntomas maternos depresivos postnatales (b = 2.0 [-3.7, -0.3]) que el grupo UC. Los infantes que recibían la intervención NBO tuvieron mayores logros en la función cognitiva y adaptiva a los 6 meses que los infantes del grupo UC. Aquellos cuidadores que recibían el cuidado NBO presentaron mejoras significativamente mayores en síntomas depresivos maternos que los cuidadores del grupo UC.

Le but de cette étude pilote était d'évaluer l'effet d'une intervention en santé mentale du nourrisson, le système d'Observation Comportementale du Nourrisson (en anglais, Newborn Behavioral Observation system, soit NBO utilisé ici dans ce texte), par rapport aux soins ordinaires (ici abbrégé SI) sur le neurodéveloppement du nourrisson et les symptômes dépressifs maternels dans l'Intervention Précoce (IP). Cet essai randomisé effectué sur plusieurs sites a concerné des nouveaux-nés dans le NBO (n = 16) ou le groupe SI (n = 22) et les a suivis pendant 6 mois. Les mesures de résultat ont inclus l'Inventaire du Développement de Battelle (BDI-2), les Echelles Bayley de Développement des Nourrissons (BSID-III) et les Echelles de Dépression du Centre d'Etudes Epidémiologiques (CES-D). Les CES-D et BSID-III ont été faites à 3 et à 6 mois après l'entrée en IP et la BDI-2 a été faite à l'entrée en IP et à 6 mois après l'entrée en IP. Nous avons estimé les différences de groupe [95% CI), en faisant des ajustements pour les caractéristiques du programme. A six mois, le groupe NBO avait fait de plus grands gains en Communication (b = 1,0 [0,2, 1,8]), Autosoin (b = 2,0 [0,1, 3,9]), Perception & Concepts (b = 2,0 [0,4, 3,6]), et Attention & Mémoire (b = 3,0 [0,4, 6,0]) que le groupe SI. Le groupe NBO a également vu le plus grand déclin dans les symptômes dépressifs postnatals maternels (b = -2,0 [-3,7, -0,3]) par rapport au groupe SI. Les nourrissons recevant l'intervention NBO ont fait preuve de plus grands gains dans la fonction cognitive et adaptive à 6 mois, par rapport aux nourrissons SI. Les personnes prenant soin des enfants et recevant le soin NBO ont témoigné d'améliorations plus importantes dans les symptômes dépressifs maternels que le groupe SI.

A Pilot Validation Study of the Newborn Behavioral Observations System: Associations with Salivary Cortisol and Temperament.

OBJECTIVE: There are few standardized neonatal neurobehavioral instruments available for longitudinal child development research. We adapted an established clinical tool, the Newborn Behavioral Observations (NBO) system, for research by standardizing the administration protocol and expanding the 3-point coding scale to 5 points. METHODS: We administered the 5-point NBO to 144 racially/ethnically diverse late preterm or term infants born to low-income women (average age 5 weeks). Cronbach's alphas were calculated to determine internal consistency reliability of Autonomic, Motor, Organization of State, and Responsivity subscales. We examined concurrent validity using subscale associations with infant salivary cortisol reactivity to the NBO and maternally reported infant temperament. RESULTS: Two of the 4 NBO subscales, Organization of State and Responsivity, had excellent (0.91) and good (0.76) reliability, respectively, and were retained for further analyses. Infants with higher Organization of State scores (more optimal regulation) demonstrated lower cortisol reactivity (r = -0.30, p < 0.01) and temperamental negativity (r = -0.16, p < 0.05). Responsivity was unrelated to cortisol reactivity or temperament. CONCLUSIONS: State regulation, as measured by the 5-point NBO, was associated with a biologic marker of infant stress response to the NBO administration and reported temperament. Poor reliability of the NBO's 3-item Autonomic and 7-item Motor subscales suggests that further psychometric research in other samples and likely refinement are needed. Given the paucity of neurobehavioral assessment tools for infants, these findings justify such research as next steps in the incremental progression toward the development of a practical, reliable, and predictive measure of early neurobehavioral development.

Child characteristics and early intervention referral and receipt of services: a retrospective cohort study.

BACKGROUND: Early Intervention (EI) is a federally mandated, state-administered system of care for children with developmental delays and disabilities under the age of three. Gaps exist in the process of accessing EI through pediatric primary care, and low rates of EI access are well documented and disproportionately affect poor and minority children. The aims of this paper are to examine child characteristics associated with gaps in EI (1) referral, (2) access and (3) service use. To our knowledge, this is the first study to leverage linked safety net health system pediatric primary care and EI records data to follow EI-referred children longitudinally to understand EI service use gaps from EI referral to EI service utilization. METHODS: In a retrospective cohort design (14,710 children with developmental disability or delay), we linked pediatric primary care records between a large, integrated safety net health system in metro Denver and its corresponding EI program (2014-2016). Using adjusted marginal effects [ME, (95% CI)], we estimated gaps in EI referral, access, and service type (i.e., physical [PT], occupational [OT], speech therapy [ST] and developmental intervention [DI]). Analyses accounted for child characteristics including socio-demographics, diagnosis, condition severity, and baseline function. RESULTS: Only 18.7% of EI-eligible children (N = 2726) received a referral; 26% of those (N = 722) received services for a net enrollment rate of 5% among EI-eligible children. Having the most severe developmental condition was positively associated with EI referral [ME = 0.334 [0.249, 0.420]) and Individualized Family Services Plan (IFSP) receipt [ME = 0.156 [0.088, 0.223]). Children less likely to be EI-referred were Black, non-Hispanic (BNH) [ME = -0.029 (- 0.054, - 0.004)] and had a diagnosed condition ([ME = - 0.046 (- 0.087, - 0.005)]. Children with a diagnosis and those with higher income were more likely to receive PT or OT. Higher baseline cognitive and adaptive skills were associated with lower likelihood of PT [ME = -0.029 (- 0.054, - 0.004)], OT [ME = -0.029 (- 0.054, - 0.004)], and ST [ME = -0.029 (- 0.054, - 0.004)]. CONCLUSIONS: We identified and characterized gaps in EI referral, access, and service use in an urban safety-net population of children with high rates of developmental delay. Interventions are needed to improve integrated systems of care affecting primary care and EI processes and coordination.

Family-centred care in early intervention: Examining caregiver perceptions of family-centred care and early intervention service use intensity.

BACKGROUND: Family-centred care (FCC) is an approach to paediatric rehabilitation service delivery endorsing shared decision making and effective communication with families. There is great need to understand how early intervention (EI) programmes implement these processes, how EI caregivers perceive them, and how they relate to EI service use. Therefore, the purpose of this study is to examine (a) parent and provider perceptions about EI FCC processes and (b) the association between FCC perceptions and EI service intensity. METHODS: In this cross-sectional study, parent perceptions of EI FCC were measured using the electronically administered Measures of Processes of Care (MPOC-56 and MPOC-SP; using 7-point scales). Participants included EI parents (n = 29) and providers (n = 9) from one urban EI programme (1/1/18-6/1/18). We linked survey responses with child characteristics and service use ascertained through EI records. We estimated parent-provider MPOC score correlations and the association between EI service intensity (hr/month) and parent MPOC scores using adjusted linear regression accounting for child characteristics. RESULTS: Parents (M = 4.2, SD = 1.1) and providers (M = 5.8, SD = 1.3) reported low involvement related to general information exchange. Parent and provider subscale scores were not correlated except that parent-reported receipt of specific information was inversely associated with provider-reported provision of general information (r = -0.4, P < .05). In adjusted models, parent perceptions related to respectful and supportive (b = 1.57, SE = 0.56) and enabling (b = 1.42, SE = 0.67) care were positively associated with EI intensity, whereas specific information exchange and general information exchange were not associated with intensity. CONCLUSION: We found that EI parents and providers reported high levels of investment in the family centredness of their EI care, with the exception of information sharing. Greater EI service intensity was associated with higher perception of involvement with some metrics of family centredness.

Early Intervention Service Intensity and Change in Children's Functional Capabilities.

OBJECTIVE: To estimate correlates of early intervention (EI) service dosage and gains in children's functional capabilities from EI entry and discharge. DESIGN: Retrospective cohort study. SETTING: Secondary analyses of a subset of data (N=1005) collected from an EI administrative database on children discharged from a large, urban EI program between October 1, 2014 and September 30, 2016. PARTICIPANTS: Children who were EI eligible due to developmental delay, had received an EI care plan and at least 1 billable EI service, and had outcomes data at EI entry and exit (N=1005). Measured child characteristics included age (49.0% 12-24mo; n=492), sex (36.0% female; n=362), number of developmental delays (76.1% had 1 developmental delay; n=765), and number of EI services received (78.5% received multiple; n=789). INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: Outcomes were EI service intensity (hours per month) and change in functional capabilities as measured via the state-mandated Child Outcomes Summary (COS). Adjusted quantile median regression estimated EI intensity. Adjusted linear regression estimated change in function for social-emotional, cognitive, and adaptive domains of the COS. Measures of children's developmental delay severity, age at EI entry, race and ethnicity, sex, and language. RESULTS: Children older than 24 months old experienced significantly higher EI service intensity (b=0.40; 95% confidence interval, 0.18-0.63). Child age and EI service intensity were significantly linked to gains in social and cognitive COS score changes from EI entry to exit. CONCLUSIONS: Older children receive a higher intensity of EI services. EI service intensity and age were linked with positive changes in functional gains.

Neonatal surgery in low- vs. high-volume institutions: a KID inpatient database outcomes and cost study after repair of congenital diaphragmatic hernia, esophageal atresia, and gastroschisis.

BACKGROUND/PURPOSE: The volume-outcome relationship and optimal surgical volumes for repair of congenital anomalies in neonates is unknown. METHODS: A retrospective study of infants who underwent diaphragmatic hernia (CDH), gastroschisis (GS), and esophageal atresia/tracheoesophageal fistula (EA/TEF) repair at US hospitals using the Kids' Inpatient Database 2009-2012. Distribution of institutional volumes was calculated. Multi-level logistic/linear regressions were used to determine the association between volume and mortality, length of stay, and costs. RESULTS: Total surgical volumes were 1186 for CDH, 1280 for EA/TEF, and 3372 for GS. Median case volume per institution was three for CDH and EA/TEF, and four for GS. Hospitals with annual case volumes ≥ 75th percentile were considered high volume. Approximately, half of all surgeries were performed at low-volume hospitals. No clinically meaningful association between volume and outcomes was found for any procedure. Median cost was greater at high- vs. low-volume hospitals [CDH: $165,964 (p < 0.0001) vs. $104,107, EA/TEF: $85,791 vs. $67,487 (p < 0.006), GS: $83,156 vs. $72,710 (p < 0.0009)]. CONCLUSIONS: An association between volume and outcome was not identified in this study using robust outcome measures. The cost of care was higher in high-volume institutions compared to low-volume institutions. LEVEL OF EVIDENCE: III.