Life Goes On: High Risk Infant Follow up & Early Intervention. Learning Objectives. Why Do We Need HRIF? 6/7/2013. Outcome studies

Transcription

1 Life Goes On: High Risk Infant Follow up & Early Intervention Anne DeBattista RN, MS, CPNP, CPMHS, PhD(c) Developmental Behavioral Pediatrics Lucile Packard Children s Hospital Learning Objectives Describe one trend in Early Intervention services nation wide in the United States List two conditions and/or risk factors associated with long term developmental difficulties Describe two or more services typically included in a HRIF program Why Do We Need HRIF? Outcome studies Risk Odds Percentages 1

2 Biologic Risk Social Risk Traumatic experiences in absence of caring relationship Damaging to learning, behavior and health across the lifespan Significant relationship between poverty & poor developmental outcomes Epigenetic Risk Epigenetics: Experience Changes Genes Positive and negative experience leave chemical signals on genes that may be temporary or permanent and change how the gene supports learning. s/multimedia/interactive_features/gene-expression/ 2

3 Myelination in First 5 years Pathways: Sensori-motor Temporal language Frontal language Pujol et al (2006) Myelination of language-related areas in the developing brain. Neurology. 66, California Children s Services (CCS) Mandated Title 5 Regional CCS approved NICUs must refer eligible babies to CCS approved HRIF program Unfunded use their medical insurance Some managed care systems not authorizing HRIF or authorize just the 1 st visit High Risk Infant Follow up Medical follow up of neonatal issues Growth Neurological Exam Developmental Assessment Psychosocial Assessment Guidance & connection to EI services 3

4 CCS HRIF Evaluations Schedule 4 8 months Adj. Age months Adj. Age months Adj. Age 4 th visit before age 3yrs if delays/not in EI services Team MD or NP SW for Psychosocial PT or OT prn concerns Psychologist 3 rd visit Multiple Medical Specialists Medical Home for complex care Specialty follow up multiple appointments Gastroenterology Neurosurgery Neurology Surgery Pulmonary Genetics Endocrinology Ophthalmology Audiology Hintz Feeding & Growth Feeding Increased caloric requirements Dyscoordination and fatigue with nippling Gastroesophageal reflux Behavioral dysregulation Growth IUGR SGA Adjusted growth Weight for height Head circumference 4

5 Vision Impairment Complications of ROP (e.g. retinal detachment, blindness) Strabismus Amblyopia Myopia Cortical visual impairment (CVI) Rate of severe developmental disability increases from 4% (no ROP) to 20% with threshold ROP (MSALL, 2000) Hearing Impairment Risk indicators for hearing loss: NICU admission for 2 d family history of hereditary childhood sensorineural hearing loss craniofacial abnormalities certain congenital syndromes and infections The prevalence of hearing loss in newborn infants with specific risk indicators is times higher than in the general population of newborns. PEDIATRICS Volume 122, Number 1, July 2008 Targeted to look for signs of cerebral palsy Amiel Tison exam Refer to CCS medical Therapy for PT & OT for: children at risk for CP < age 3 years 2 Neurological physical exam findings Neurologic Exam 5

6 Cerebral Palsy Pathological lesion in brain that impacts movement and or muscle tone Different types of cp Neurological symptoms in preemies can change over time range of severity Diagnosis usually not made in preemies until after 18m adjusted age Want to start physical and occupational therapy as early as possible Prevalence of Cerebral Palsy 9 Europe Countries 88, 371 live births Overall 1.9/1000 live births <28 weeks 77/1, weeks 40/1, weeks 7/1,000 > 36 weeks 1.1/1,000 Himmelmann 2005 Cerebral Palsy Cerebral Palsy There is a range of severity Volpe, 4 th edition 6

7 Cerebral Palsy A group of disorders of the development of movement and posture, causing activity limitations that are attributed to non progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of CP are often accompanied by disturbances of sensation, cognition, communication, perception, and/or behavior, and/or by a seizure disorder. Bax et al Diagnostic Imaging preemies <1500 grams with grade I or II IVH 3D MRIs near term age Cortical Gray Matter Volume was significantly reduced (Vasileiadis, PEDIATIRICS 9/2004) Normal HUS/MRI adolescents born premature Abnormal brain volumes & white matter abnormalities without distinctive injuries (Arthur, Pediatric Radiology,2006) VLBW preemies at age 15 years >PWMI compared to Term and SGA controls (Vangerg, Neuroimaging, 11/2006, Norway) White Matter Injury Encephalopathy Of Prematurity (Volpe, 2009) PWMI and accompanying neuronal/axonal deficits leads to deficit of mature oligodendrocytes, impaired myelination and decreased brain volume Focal injury (<5%) Deep in white matter Diffuse Noncystic and evolves over several weeks to form glial scars Focal or diffuse noncystic injury is emerging as the predominant lesion (Back, 2007, Stroke) 7

8 T2 Weighted MRI Scans None Mild Moderate Severe n=47 (28%) n=85 (51%) n=29 (17%) n= 6 (4%) Total preemies < 32 weeks gestation n = 167 Woodward, NEJM 2006 Normalizing MRI Reports The increased T2 signal intensity in periventricular white matter could be White Matter Injury undermyelination associated with prematurity (Used to say clinical correlation indicated) NICU DC Summary reports Normal MRI Counsell SJ 2003 Arch Dis neonatal fetal What is Common in Preemies is Not Always Normal Preemie Graduate Services Long Term Morbidities Cerebral palsy Cognitive deficits Speech/Language deficits Coordination/balance Attention Mental Health Disorders ADHD, Autism, Schizophrenia Learning differences Visual motor perception Social/ emotional 8

9 Preemie Project: Medical Legal Community Collaborative Preemie Project Longitudinal study of preterm children as part of a community based collaborative that promoted early access to intervention services. Prospective cohort of preterm infants born between All children born <37 weeks gestational age (GA) and <2500 grams and met one California Children Services risk factor for developmental delay. Preemie Project Lives On LPCH First Five Preemie Project Grant Watch Me Grow: Medical Community Collaborative Peninsula Family Advocacy Program (FAP) at LPCH 9

10 When do Preemies Catch up to Term Peers in Development? Historically Gessell Automatic Catch up Web MD 2009 Parent Blogs 23 lb. pumpkin ( current weight) 1½ lb. pumpkin (birth weight) Preemies Born with Immature Brains Development is delayed compared to Term Peers Development of sulcation and gyration with increasing GA. Transverse T2 weighted FSE images at the level of the central sulcus 25weeks GA 39 Weeks GA Developmental Catch Up Average Range Percent Of Preemies With Standard Scores > 85 Preschool Language Scale (n=93) BSID-II/ WPSSI-III (n=92) Vineland Adaptive Behavior Scales (n=97) AGE Language Cognitive Comp Communication Daily Living Social Motor ~2 yr 43% 22% 45% 50% 56% 61% 75% ~3yr 58% 58% 57% 66% 63% 55% 66% DeBattista,

11 Preemie Catch Up Extensive systematic review of medical and psychological literature Promoting that preemies catch up by age 2 years is not evidence based practice (Wilson & Cradock, Journal of Pediatric Psychology) Adjusted Age IQ over time n=296 Preemies with birth weights < 1250 grams Scores months 72 months 96 months FSIQ VIQ PIQ Ment et al, 2003 Shift To the Left 90 With Mean Score 90 instead of 100 Greater Percentage Falling In The Borderline Range May Not Be Eligible for Special Education 11

12 Community Resources Public Health Nursing Federally funded Family Resource Centers Early Head Start (parenting/developmental support) More funding through ACA Community Early Intervention Public Services California Early Start Program DDS Regional Centers (GGRC, SARC) Schools (ECE) California Children s Services (CCS) Medical Therapy Program Blind Babies Private Therapies PT, OT, ST Early Start Program Federal Extension of IDEA legislation for children birth to 3 years Therapies and Infant Programs for children with Developmental Delays & Disabilities Parents role the home program 12

13 Early Start Program California budget cuts 2009 NICU grads no longer eligible at discharge based on risk Families must use private insurance up before Early Start will provide service Early Start Program Eligibility Categories: Developmental Delay Percent delay using adjusted age scores Under 2 years (33% delayed in 1 domain): 22m/18m function < 12m in one area Over 2 years (50% in 1, 33% in 2 domains): 22m/18m function < 9m in one area Established Risk Solely Low Incidence National EI Trends Nationally, only 17% of children who are younger than 5 years and whose development was classified as delayed actually received services for those delays (Rosenberg, 2008) NICHD Neonatal Network (Hintz, 2008) <1000 gm preemies born (n= 2,315) up to 44% had not received any EI services by the 18 22month visit. 13

14 EI Literature Trend to NICU Recent EI studies mostly NICU based threats to internal validity d/t environment Developmental care, cue based care, positive touch, kangaroo care all designed to support the developing nervous system and attachment in the abnormal NICU environment Best evidence long term outcomes combined with physiologic measure Summary Developmental outcomes are impacted by biologic, social and epigenetic risk We can t predict exact outcomes for individual babies There isn t a formula for neuroplasticity There is nothing magical about age 2 Summary Research knowledge > increased: understanding of neuropathology & genes understanding of the importance of environmental experiences on brain development Decreased investment in resources to promote early and sustained environmental experiences and therapies 14

15 Summary What Can We Do? Mitigate risk of altered neurological development NICU based developmental care Including Positive Touch (containment, skin to skin) Encourage attachment between parent and infant Talk to parents about how to nurture development after discharge Summary What Can We Do? Educate Parents at the bedside 1. Genes provide the blueprint but experiences shape our brain development a. Plasticity is greatest in the early years! 2. Interactions shape the brain beginning in infancy Harvard serve and return 3. Prolonged activation of toxic stress can damage the brain development Summary What Can We Do? Educate Parents: (Parents as Teachers) Child directed & cue based responses to promote a quiet alert state (attention) Warm social interactions promote neuronal organization and myelination (grow brains) Face to face nonverbal Face to face verbal parentese Play by play narration (# of words matters) Looking at books together 2 3x more language 15

16 Summary What Can We Do? Avoid the crystal ball can t predict for individuals Educate families that we use adjusted and chronological age scores to monitor gains for developmental catch up. Not all premature infants catch up by age two, and they can continue to make gains after age two years. Summary What Can We Do? Educate families about the importance of HRIF developmental follow up for the entire first few years Empower families to appeal denials of HRIF services or make sure they talk to their pcp about regular formal assessments Neurons To Neighborhoods The Science of Early Childhood Development National Research Council Institute of Medicine, 2001 Human development is shaped by a dynamic and continuous interaction between biology and experience. 16

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