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Developmental TIPSPAIGE E. HARDY DNP, APRN, NNP-BC

Many NICU graduates are at high-risk for developmental delays in their early childhood years.There is also concern for the outcomes of their families.

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Importance of Developmental Follow-up

Monitor infant’s development through developmental surveillance to assure early identification of developmental problems

Provide ongoing support to families of young children Identify outcomes of this population of children

Purpose To implement a statewide program to provide

specialized developmental follow-up for babies who have been patients in the NICU

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Developmental TIPSTracking Infant Progress Statewide

Program Goals:Standardize the system of developmental follow-upGather outcome data for this population of young childrenChild Find for Early Development Network

Developmental TIPS Tracking Infant Progress Statewide

Collaborative Project Hospitals

NE Health and Human Services system

Nebraska Department of Education

Local Planning Regional teams

Family members

Community providers

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Funding

Provided by:

Nebraska Department of Education

Nebraska Department of Health and Human Services

Local hospitals Munroe-Meyer Institute

Concerns regarding developmental outcomes

Cerebral Palsy Mental handicap Blindness Deafness Speech-language delays Decreased executive functioning skills

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Who is eligible?

All infants that were admitted to a NICU for 72 hours or more Infants in one of 11 Nebraska hospitals Nebraska resident infants hospitalized in Denver, Rapid City or Sioux

City TIPS is voluntary

Clinic Staff

Developmental Pediatrician Neonatal Nurse Practitioner Physchologist Developmental Specialist Physical Therapist Staff nurse

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Three-Tiered Model of Follow-up

Level I (low risk referral)Level II (at risk for developmental

problems)Level III (has a diagnosis that may be

associated with developmental delays)

Level II CriteriaChildren with one or more of the following criteria will typically be followed in TIPS clinic

Birth Weight of < 1500 grams

Five minute Apgar of < 6

Oscillatory ventilation

ECMO

Cooling Therapies

Grade III - IV IVH

Grade III retinopathy / laser surgery

Seizures

Cystic PVL

Surgical Conditions

Syndromes or multiple congenital anomalies which may or may not be associated with developmental problems

Congenital Heart Disease

Failed hearing screen at time of discharge

Multiple birth siblings of identified high risk infant

Exchange transfusion

Physician referral (clinical judgment –please indicate your concern on enrollment)

Social / environmental risk (please indicate your concern on enrollment

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LEVEL III CriteriaChildren with one or more of the following criteria are typically accepted for school services

Syndromes or congenital anomalies associated with knowndevelopmental delay, .e.g., Trisomy 21, CHARGE,

ROP requiring therapy beyond laser treatment Confirmed hearing impairment CPS Referral (CAPTA) Referral is indicated; may or may not be

accepted NG or GT feedings ( if the NG or GT is used for 75% or more of child’s

nutrition)

TIPS visit at 6 months (CGA)

Bayley Scales of Infant Development III (BSID-3) Bayley Screener Test III (BSID screener) Survey of Well Being of Young Children Edinburgh Post-natal depression screen Developmental interview

AIMS (not at all locations) Gessell Developmental Scale (not at all locations)

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TIPS visit at 16 months (CGA)

Bayley Screener Modified Checklist for Autism in Toddlers (MCHAT-R) Communication Symbolic Behavior Scales Development Profile

(CSBS-DP)- Infant/Toddler Checklist

TIPS at 2 years chronological age

Bayley Scales of Infant Development III Developmental Interview

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Unable to access a TIPS clinic

Ages and Stages Questionnaire 3

Follow up phone call with the Developmental Specialist

What have we learned about our NICU graduates?

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1719 infants were enrolled in Developmental TIPS.

478

393

279

228

190

98

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6

5

5

0 100 200 300 400 500

Methodist WH

Children's MC

CHI- Bergan Mercy

Bryan Health

NE Medical Center

CHI- St Elizabeth

CHI- Lakeside

Good Samaritan

Bellevue MC

Kearney Regional MC

Other

# of Children Referred by Hospital

.

69% of the children were born prematurely

The majority of the premature babies were 34 to 36 weeks gestational age.

<1%

3%

7%

18%

41%

31%

0% 50%

<25

25-27

28-30

31-33

34-36

37+

Ges

tatio

nal A

ge (w

ks)

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Ethnic Diversity

HispanicBlackMulti-RacialOtherAsianWhite

Caucasian

72%

Hispanic 10%

Black 8%

Multi-racial 4%

Asian/Pacific Islander 2%

Other 2%

The highest percentage of children who need further assessment is at 16 months corrected age.Across developmental screeners, the data demonstrates a need for consistent, long term follow-up.

16%

23%

15%

13%

17%

9%10%

5%

6 MONTHS (CA) 16 MONTHS (CA) 24 MONTHS 36 MONTHS

% N

eed

ing

Fu

rth

er A

sses

ssm

ent

ASQ n=1081

MCHAT/MCHAT-Rn=644

CSBS n=788

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Half of the families had private insurance.

Less than 1% were uninsured.

Private 50% Medicaid 42% Private & Medicaid 7%

3%

4%

5%

6%

8%

16%

26%

20%

17%

20%

81%

70%

75%

77%

72%

0% 50% 100%

Competent Emerging At-Risk

Fine Motor n=539

Cognitive n=258

Expressive n=253

Results of BSID -III Screening

Receptive n=251

Gross Motor n=541

Results of the BSID

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Moderate risk children scored higher in both their language and cognitive skills than their high risk peers.

97

96

90

87

82 84 86 88 90 92 94 96 98

Language

Cognitive

Moderate Risk High Risk

n=226

n=52

n=221

n=53

TIPS Clinic Follow up

At 3 years of age an Ages and Stages questionnaire is sent to the family A Developmental specialist reviews the answers and follows up with the

family as necessary

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Early Development Network2017-2018

TIPS program found 448 infants to be eligible for referrel 91 children were referred

-85% were referred after discharge-Half of those referred were considered to be at moderate risk

Early Development Network2017-2018

52% received Physical Therapy 41% received Occupational Therapy 31% received Speech and Language services 30% service coordination 23% home based educator

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TIPS research

Miller, K., Marvin, C., & Lambert, M. (2019). Factors Influencing Acceptance Into Part C Early Intervention Among Low-Risk Graduates of Neonatal Intensive Care Units. Infants & Young Children, 32(1), 20-32.

Jensen-Willett, S., Pleasant, M., Jackson, B., Needelman, H., Roberts, H., & McMorris, C. (2019). Sitting Matters! Differences Between Sitters and Nonsitters at 6 Months' Adjusted Age in Infants At-Risk and Born Preterm. Pediatric Physical Therapy, 31(3), 257-262.

Miller, K., Roberts, H., & Needelman, H. (2019, September).Thinking Outside the Box: Executive Functions in Neonatal Intensive Care Unit Graduates. Poster presented at The Society for Developmental and Behavioral Pediatrics Annual Meeting.

Needelman, H., Roberts, H., & Zhou, C. (2019, September). Neonatal Survey and Maternal Depression Screening. Poster presented at The Society for Developmental and Behavioral Pediatrics Annual Meeting.

Summarize

Developmental TIPS has successfully instituted and maintained a statewide enrollment process for infants with a NICU experience.

The majority of the children were considered low risk at the time of discharge.

This three-tiered model of follow-up has provided a mechanism for early identification and referral to the Early Development Network and Early Intervention services

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References

Miller, K. (2018). Early Intervention for NICU Graduates. In Needelman, H. & Jackson, B. (Eds.), Follow-Up for NICU Graduates (pp. 293-311). Springer: Cham, Switzerland.

Miller, K. (2018, March). Parents’ Self-Efficacy and Early Intervention Following Neonatal Intensive Care Unit Discharge. Conference on Research Innovations in Early Intervention, San Diego, CA.

Needelman, H. (2017, October). Cerebral Palsy: Improving Outcomes through Early Diagnosis and Intervention. Society of Developmental and Behavioral Pediatrics Annual Meeting, Cleveland, OH.

Needelman, H. (2018, February). Follow Me Through the Follow-Up Clinic: Clinic Care Experiences and Neonatal Developmental Outcomes. Panel discussion at Neonatal Developmental Care Conference, Children’s Hospital and Medical Center, Omaha, NE

Needelman, H., & Jackson, B. J. (Eds.). (2018). Follow-Up for NICU Graduates: Promoting Positive Developmental and Behavioral Outcomes for At-Risk Infants. Springer: Cham, Switzerland.

Willett, S. (2018). Developmental Care in the Nursery. In In Needelman, H. & Jackson, B. (Eds.), Follow-Up for NICU Graduates (pp. 15-58). Springer: Cham, Switzerland.

Willett, S. (2018, February). Sit Matters! Differences between Sitters and Non-Sitters in a Cohort of At-Risk, Premature Infants at Six Months Adjusted Age. APTA Combined Sections Meeting, New Orleans, LA

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