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.

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.

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.

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).

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.

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.

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.

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.

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.

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.

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.

Patient-Centered Medical Home and Receipt of Part C Early Intervention Among Young CSHCN and Developmental Disabilities Versus Delays: NS-CSHCN 2009-2010.

Objective To determine, among a sample of young CSHCN with developmental conditions, (1) characteristics associated with receipt of both patient-centered medical home (PCMH) and Part C early intervention, (2) the association between each PCMH criterion and receipt of Part C generally, and (3) for CSHCN with disabilities versus delays. Methods Secondary data analysis of the 2009/10 National Survey of CSHCN. Sample included CSHCN (n = 755) birth to 3 years with a developmental disability or delay that affected their function. Adjusted ordinal regression analysis examined characteristics associated with receiving both PCMH and Part C. Stratified adjusted logistic regression examined the association between PCMH criteria and Part C, by disabilities versus delays. Results 19% of our sample received both PCMH and Part C. Black, non-Hispanic children had lower odds [OR 0.44, 95% CI (0.20, 0.97)] and CSHCN with more severe developmental conditions had higher odds [OR 2.13, 95% CI (1.22, 3.17)] of receiving both services. CSHCN with a PCMH were no more likely to be receiving Part C than those without a PCMH [OR 0.85, 95% CI (0.49, 1.49)]. Receiving any one of the PCMH criterion was not associated with receiving Part C, with one exception. Among CSHCN with delays, effective care coordination was associated with lower odds of Part C [OR 0.46, 95% CI (0.21, 0.97)]. Conclusion Concurrent PCMH and Part C access was low for young CSHCN with developmental conditions affecting their function. Given the overlapping mandates for PCMH and Part C, integrated efforts are warranted to identify if lack of concurrent services in fact reflects unmet service needs.

Therapy Use for Children With Developmental Conditions: Analysis of Colorado Medicaid Data.

STUDY PURPOSE: To examine therapy use and spending for Medicaid-enrolled infants and toddlers with developmental conditions. METHODS: Sample infants and toddlers had a diagnosis (eg, cerebral palsy) or developmental delay (DD). Colorado Children's Medicaid administrative outpatient therapy claims (2006-2008) were used to estimate differences, by condition type and number of comorbid chronic conditions (CCCs), of any physical therapy (PT)/occupational therapy (OT) and Medicaid PT/OT spending. RESULTS: The sample included 20 959 children. Children with at least 2 CCCs had higher odds of PT/OT than children with no CCC. Children with DD had 12-fold higher odds of having any PT/OT compared with children with diagnosis. Children with a DD and 2 CCCs had the highest PT/OT spending. CONCLUSIONS: Medicaid PT/OT use and spending are higher for children with more CCCs and those with DD because children with DD receive more specialized PT/OT.

Identifying Infants and Toddlers at High Risk for Persistent Delays.

OBJECTIVES: Little is known about the extent to which a developmental delay identified in infancy persists into early childhood. This study examined the persistence of developmental delays in a large nationally representative sample of infants and toddlers who did not receive early intervention. METHODS: In a sample (n ≈ 8700) derived from the early childhood longitudinal study, birth cohort, we examined developmental changes between 9 and 24 months. Motor and cognitive delays were categorized as none, mild, and moderate/severe. Adjusted ordinal logistic regression models estimated the likelihood of worse developmental delay at 24 months. RESULTS: About 24 % of children had a cognitive delay and 27 % had a motor delay at either 9- or 24-months. About 77 % of children with mild and 70 % of children with moderate/severe cognitive or motor developmental delay at 9-months had no delay at 24-months. Children with mild cognitive delay at 9-months had 2.4 times the odds of having worse cognitive function at 24-months compared to children with no cognitive delay at 9 months. Children with moderate/severe cognitive delay at 9-months had three times the odds of having worse cognitive abilities at 24-months than children who had no cognitive delay at 9-months. Similar results were found for motor skills. CONCLUSIONS: Developmental delays in infants are changeable, often resolving without treatment. This work provides knowledge about baseline trajectories of infants without and without cognitive and motor delays. It documents the proportion of children's delays that are likely to be outgrown without EI and the rate at which typically-developing infants are likely to display developmental delays at 2-years of age.

State Medicaid Eligibility Criteria and Unmet Preventive Dental Care Need for CSHCN.

OBJECTIVE: To determine if Medicaid eligibility is associated with unmet preventive dental care need for Medicaid-enrolled CSHCN. METHODS: We analyzed the 2009-2010 National Survey of CSHCN and focused on Medicaid-enrolled children ages 3-17. The outcome measure was parent-reported unmet need for preventive dental care. The predictor variable was state Medicaid eligibility criteria, categorized as broad [>250 % Federal Poverty Level (FPL)], moderate (200-249 % FPL), and narrow (<200 % FPL). Multiple variable multilevel logistic regression models estimated the association between state-level eligibility criteria and variability in unmet need. RESULTS: The multilevel models indicated no significant association between Medicaid eligibility criteria and unmet preventive dental care need. CSHCN with more severe chronic health conditions had significantly greater odds of unmet need (OR 1.52; 95 % CI 1.28, 1.82) and CSHCN with a medical home had significantly lower odds (OR 0.61; 95 % CI 0.50, 0.75). CONCLUSIONS FOR PRACTICE: There is significant state variability in unmet need for preventive dental care for Medicaid-enrolled CSHCN. Broadening Medicaid eligibility criteria alone is not likely to address the preventive dental care needs of CSHCN, which has policy implications for improving oral health disparities for publicly-insured CSHCN.

Caregiver burden and preventive dental care use for US children with special health care needs: a stratified analysis based on functional limitation.

The objectives of this study were to evaluate the association between caregiver burden and preventive dental care use for children with special health care needs (CSHCN) and assess if caregiver burden explains the relationship between child- and family-level characteristics and preventive dental care use. Samples of US CSHCN ages 3-17 years with a functional limitation (n = 7,559) and those without (n = 26,345) were derived from the 2005-2006 National Survey of CSHCN. We generated structural equation models, stratified by functional limitation, to describe the relationships between caregiver burden and preventive dental utilization. We measured caregiver burden using six items on whether the child's health condition impacted work, time spent on health management, and finances. About 80.9 % of CSHCN used preventive dental care. Higher levels of caregiver burden were associated with significantly lower odds of preventive dental care use for CHSCN with a functional limitation (ß = -0.06; P < 0.001) and those without (ß = -0.07; P < 0.001). For CSHCN with a functional limitation, family poverty and being uninsured were significantly associated with greater caregiver burden and less preventive dental use. Findings were similar for CSHCN without a functional limitation, except that lower caregiver education was also associated with greater caregiver burden and less preventive dental care use. Caregiver burden is potential barrier to preventive dental care use for CSHCN and explains the relationship between child- and family-level characteristics and preventive dental care use. Interventions to improve the oral health of CSHCN should include strategies to reduce caregiver burden, especially within socioeconomically vulnerable families.

Restricting state part C eligibility policy is associated with lower early intervention utilization.

To examine if state differences in early intervention (EI) utilization can be explained by recent restrictions on EI state eligibility policy. The sample (n = 923), derived from the 2009/10 National Survey of Children with Special Health Care Needs, included CSHCN who were ages 0-3 with a developmental delay or disability that affected their function. Multi-level logistic modeling was used to describe state differences in EI utilization and to determine if narrower state eligibility policy explained these differences. EI utilization ranged from 6 to 87 % across states. Having a severe condition (ß = 0.99, SE = 0.28) and a usual source of care (ß = 0.01, SE = 0.001) was associated with higher odds of utilizing EI. Compared to a diagnosed disability, having a developmental delay (ß = -0.61, SE = 0.20) was associated with lower odds of utilizing EI. Living in a state with narrow and narrower state eligibility policy (ß = -0.18, SE = 0.06) was significantly associated with lower odds of EI utilization, and this effect was strongest for children with the most severe functional impairments. Significant state variation in EI rates exists that can be explained, in part, by the restrictiveness of state eligibility criteria. Children with the most severe functional impairments appear to be least likely to utilize EI in states with the most restrictive eligibility policies.