Neonatal intensive care unit follow-through programs provide early evaluation information for the primary care physician. This article describes such data for 339 graduates of St Joseph\u27s Special Care Nursery, 78% of whom were preterm and 70% were of low birth weight. At six months, 7% of the infants were diagnosed with cerebral palsy, based on a 15-month follow-up. Other neurological and respiratory problems were common. A normal neurodevelopmental outcome was found for the majority of the infants. Referrals to medical specialists (eg, ophthalmology) and early intervention programs were required for many infants. The case management role of the primary physician is highlighted along with specific recommendations for care of the medically at-risk or developmentally delayed infant. Wis Med J 1990;89(3):111-114

Behee-Semler, Bonnie Jean

Fox, Robert A.

Ragatz, Stephen C.

English

epublications@Marquette

Marquette Universitye-Publications@MarquetteCollege of Education Faculty Research andPublications Education, College of3-1-1990Implications of a NICU Perinatal Follow ThroughProgram for the Primary Care PhysicianStephen C. RagatzSt Joseph's HospitalBonnie Jean Behee-SemlerMarquette UniversityRobert A. FoxMarquette University, robert.fox@marquette.eduPublished version. Wisconsin Medical Journal, Vol. 89, No. 3 (March 1990): 111-114. DOI. © 1990Wisconsin Medical Society. Used with permission.Perinatal follow through: Implications for primary physicians Stephen C. Ragatz, MD, Bonnie Behee-Semler, RN, and Robert A. Fox, PhD, Milwaukee Neonatal intensive care unit follow-through programs provide early evaluation information for the primary care physician. This article describes such data for 339 graduates of St Joseph's Special Care Nursery, 78% of whom were preterm and 70% were of low birth weight. At six months, 7% of the infants were diagnosed with cerebral palsy, based on a 15-month follow-up. Other neurological and respiratory prob-lems were common. A normal neurodevelopmental outcome was found for the majority of the infants. Referrals to medical specialists (eg, ophthal-mology) and early intervention programs were required for many infants. The case management role of the primary physician is highlighted along with specific recommendations for care of the medically at-risk or developmentally delayed infant. Wis Med J 1990;89(3):111-114. FOLLOW-UP MONITORING clinics have a positive effect on infants served through neonatal intensive care units (NICU).l The important role of the primary care physician in following NICU graduates has been described. 2 The role of the primary care physician in following NICU graduates will be affected by recently enacted legislation, namely, Public Law 99-457, The Education of the Handicapped Act Amendments of 1986. Under the provisions of this law, states are provided funding to develop programs for infants and chil-dren from birth to 3 years old with handicapping conditions. The American Academy of Pedi-atric's Committee on Children with Disabilities has published a statement regarding the physician's role in this expanded service delivery system.3 One key responsibility is to address the effect of the condition on the child Dr Ragatz and Ms Behee-Semler are with the Perinatal Follow-Through Program at St Joseph's Hospital in Milwaukee-Dr Ragatz is the medical director and Ms Behee-Semler is program coordinator. Dr Fox is a professor in the School of Educa-tion at Marquette University. Reprints requests to: Robert A. Fox, PhD, School of Education, Marquette University, Schroeder Complex, Milwaukee, WI 53233. Copyright 1990 by the State Medical Society of Wisconsin. Wisconsin Medical Journal • March 1990 and family and to act as a family advocate to ensure that the child receives appropriate therapeutic ser-vices. To assume this case manage-ment role, physicians need to be aware of the array of medical and related difficulties experienced by NICU graduates and the evaluation data available through follow-up monitoring clinics. Our paper highlights this informa-tion base using birth-outcome and follow-through data from St Joseph Hospital's Special Care Nursery and Perinatal Follow-Through Program (PFTP). Subjects and methods Our study included 339 neonates (38% girls, 620/0 boys) admitted to St Joseph's Special Care Nursery from June 1985 to July 1986, and who sub-sequently enrolled in the PFTP. The racial breakdown was 88% white, 11 % black, and 1% Hispanic. Most were born to married parents (78%) of middle socioeconomic levels; 14% had unmarried parents. Enrollment was based on meeting at least one of the criteria shown in Table 1. Appointments were scheduled at 6, 15, and 30 months (corrected age). Some infants were seen earlier if deemed necessary at the time of dis-charge from the hospital, and more frequent visits were scheduled if the evaluations produced questionable findings. During the PFTP appoint-ment, a pediatric nurse practitioner completed a health history and phy-sical exam. The corrected age was used to plot the infant's body measurements on the Babson and Benda Growth Chart for preterm infants. The Denver Developmental Screening Test, a language question-naire compiled by the pediatric speech therapist, the Denver Eye Screening Test, and the High Risk Register for Hearing Loss were administered. The physical therapist completed a neuro-developmental assessment using a tool4 that combined the Primitive Reflex Profile,5 French Angles,6 and a method described by Milani-Com-paretti and Gidoni.' The preliminary diagnosis of cerebral palsy was based on this latter evaluation. Table 1. Criteria for enrollment in the perinatal follow-through program Birth weight less than 1500 grams. Gestational age less than 32 weeks. Small for gestational age (below 2nd percentile) Mechanical ventilation required > 5 days (eg, severe RDS, severe sepsis). Apgar score < 4 at five minutes. Seizures. Meningitis. Intracranial hemorrhage. Hydrocephalus. Abnormal neurologic exam at discharge. Congenital viral infection. Congenital anomalies or genetic disease with uncertain prognosis. Drug withdrawal symptoms/ maternal drug abuse (especially cocaine). Thrombocytopenia / polycythemia. 111 ~ Table 2. Birth outcome data for perinatal follow-through program infants Variable x Birth weight (g) 2112 less than 1,500 1,500-2,499 2,500 or more Gestational age (wk) 33.4 36 or less 37-43 Apgar score at 1 min 5.7 3 or less 4-6 7-10 Apgar score at 5 min 7.7 3 or less 4-6 7-10 Birth length (cm) 44.3 Head circumference (cm) 30.6 Pneumogram result normal borderline abnormal At 15 months, the Bayley Scales of Infant Development were adminis-tered by an occupational therapist. Near the conclusion of each FPTP evaluation, a neonatologist examined the infant and joined the family and other evaluation team members to discuss the results. Families were pro-vided resources for identified prob-lems. The results of the evaluation were sent to each family's primary care physician along with recommen-dations for special program referrals when warranted (eg, programs for newborn to 3-year-old children). The PFTP serves an eight-county area; evaluation services were pro-vided at no cost to the families. Results Birth outcomes. Birth outcome data regarding the sample are shown in Table 2; 78% of the sample were preterm, and 70% were of low birth weight. In addition to prematurity, the most common discharge diagnoses 112 SD n % 923 89 30 120 40 90 30 4.6 232 78 67 22 2.3 63 21 99 32 134 45 1.6 10 3 36 12 251 85 6.1 3.6 69 28 13 5 162 67 were respiratory distress syndrome, meconium aspiration syndrome, as-phyxia, apnea, seizures, and con-genital anomalies. Most infants required a home monitor when dis-charged (69%). PFTP outcomes. Outcome data ob-tained through the PFTP are shown in Table 3 for the 6-, 15-, and 30-month visits. At the 6- and 15-month visits, nearly one out of five infants' birth weights were below the second percentile when plotted for corrected age. Regarding the early diagnosis of cerebral palsy, 16 of the 23 infants with positive diagnoses at six months returned for a IS-month visit. Of these, 13 retained the diag-nosis (81 %); two children were reclas-sified as equivocal and one as normal (false positives). Two children con-sidered equivocal and one child clas-sified as normal at the six -month visit, were diagnosed as having cerebral palsy at the 15-month visit (false negatives). Of the 10 hypotonic children who returned for a IS-month visit, seven (70%) retained that diagnosis; three were reclassified as equivocal or normal (false positives). Seventeen children diagnosed as equivocal or normal at the six-month visit, were reclassified as hypotonic at the 15-month visit (false negatives). The average Bayley Mental Devel-opment Index at the IS-month visit was 104 (SD = 22). Infants diagnosed with cerebral palsy at 15 months (n = 18) had the lowest Bayley scores (p < .001) in the sample (x = 66; range, 50 to 105); ten had scores in the delayed range, six in the border-line range, and two in the normal range. Children considered hypotonic or equivocal at 15 months had the next lowest Bayley scores (x = 87 and x = 89, respectively) followed by the "normal" children (x = 112). Of the children seen at the 30-month visit (n = 60), the average Bayley score was 114 (SD = 18). The infants spent an average of 4.8 months on the home monitor (SD = 2.8; range, 1 to 30). Ofthe 196 infants on monitors, 12 had apparent life-threatening events (AL TES), with ten infants requiring vigorous stimulation when the alarm sounded and two re-quiring cardiopulmonary resuscita-tion; only 3% of the parents reported having persistent anxiety over the presence of the monitor in the home, and 5% felt dependent on the monitor when it was discontinued. There were no deaths. Data on other services provided to the infants are summarized in Table 3. A number of infants (7%) were already enrolled in various early intervention programs (eg, special education, speech, occupational or physical therapy) before their six-month visit. By 15 months, nearly one out of five infants (19%) were either enrolled in or referred for therapy; four infants were discharged from therapy by 15 months. Common rea-sons for physician visits included upper respiratory infection, otitis media, bronchiolitis, and gastro-enteritis. Wisconsin Medical Journal. March 1990 Discussion Our data showed that a significant majority of NICU graduates have a normal neurodevelopmental out-come, even those with very low birth weights or very low gestational ages. This is encouraging to parents and professionals in view of the emotional and economic costs involved to achieve these goals. The data also showed, however, that the NICU graduate is at increased risk for growth and neurodevelopmental sequelae. High-risk infant follow-through clinics provide early detec-tion of these handicapping conditions, particularly cerebral palsy. Most level III perinatal centers in Wisconsin are associated with such a clinic. The data also showed that cerebral palsy was accurately diagnosed in more than 80% of the cases by the six-month visit. These children present dilemmas for the primary care phy-sician. They often have subtle symptoms and may require a detailed, time-consuming neurologic evalua-tion to elicit findings suggesting emerging neurodevelopmental prob-lems. Timing is important as these children benefit most from early intervention programs the sooner they are enrolled. Families of NICU graduates require continued care and support as they encounter myriad therapeutic agen-cies and services. The family's pri-mary care physician is ideally suited to assume a case management role with these families to provide con-tinued medical management of the infant, to support the family through this stressful and often extended experience, and to serve as an advo-cate to ensure that appropriate thera-peutic services are delivered in a timely manner. Armed with the data provided by follow-through clinics and the advice of experienced col-le~gues,z the primary care physician wlll be better prepared to fulfill these responsibilities. Recommendations The following recommendations apply to the primary care of medic-Wisconsin Medical Journal. March 1990 Table 3. Perinatal Follow Through Program outcomes at 6, 15 and 30 month visits. 6 months Variable n Weight percentile 16th or less 174 50th or more 165 Length percentile 16th or less 134 50th or more 205 Head circumference percentile 16th or less 86 50th or more 253 Diagnosis cerebral palsy 23 hypotonia 18 equivocal 71 normal 224 Bayley Mental Development Index normal (85 or more) borderline (69-84) delayed (below 69) Therapy program enrolled 25 referred 19 none 295 Number of visits to physician none 161 1-2 134 3 or more 44 Specialists ophthalmology 55 neurology 20 orthopedics 19 surgery 16 cardiology 8 ENT 5 Number of hospitalizations none 270 1 57 2 or more 12 ally at-risk or developmentally de-layed infants: • plot growth at the "corrected age," using the Babson Graph, which is available from infant formula com-pany representatives; • use "corrected age" when screen-ing infant development; % 51 49 39 61 25 75 7 5 21 67 7 6 87 47 40 13 45 16 15 13 7 4 80 17 3 15 months 30 months n % n % 124 50 15 25 126 50 45 75 90 36 21 35 160 64 39 65 77 31 173 69 18 8 25 10 25 10 173 72 208 83 57 95 20 8 2 3 22 9 1 2 39 16 9 12 8 3 0 0 199 81 68 88 41 16 7 12 107 43 32 53 101 41 21 35 33 32 4 25 7 7 1 6 19 18 2 13 11 11 1 6 10 10 3 19 23 22 5 31 206 83 54 90 30 12 6 10 13 5 • coordinate the management of the home apnea monitor using the Peri-natal Center Apnea and High Risk Infant Follow-Through programs as resources; • if multiple specialists are involved, coordinate and interpret findings for the parents; 113 • become familiar with the thera-peutic and educational resources in your community (eg, birth to three programs) and refer patients to these programs as soon as problems are identified or suspected; use these pro-grams as resources for the more de-tailed and time-consuming develop-mental evaluations; and maintain open lines of communication with these programs, share pertinent medi-cal information, and request that the child's goals, plans, and reports be sent to you; and • ask families for an assessment of their situation and what they see as their greatest needs. Public Law 99-457 emphasizes the family's role in problem identification and decision making related to services for their children. Acknowledgements The authors would like to thank S. Deacon, MD, L. Bear, MD, J. Glaspey, MD, C. Blaser, RN, M. Lewis, RN, and Jodi Engelberg for their contributions to this project. St Joseph's Follow-Through Program was funded in part by the Bureau of Children with Physical Needs and the Department of Public Instruction in Madison. References 1. Slater MA, Naqvi M, Andrew L, et al: Neurodevelopment of monitored ver-sus nonmonitored very low birth weight infants: The importance of family influ-ences. J Dev Behav Pediatr 1987;8: 278-287. 2. Bernbaum j, Hoffman·Williamson M: Following the NICU graduate. Cont Pediatr 1986;3:22-37. 3. Committee on Children With Disabili-ties: Pediatrician's role in the develop-ment and implementation of an indi-vidual education plan. Pediatn·cs 1987; 80:750-751. 4. Ellison P, Browning CA, Larson B, et al: Development of a scoring system for the Milani-Comparetti and Gidoni Method of assessing neurologic abnor-mality in infancy. Plzys Ther 1983;63: 1414-1421. 5. Capute AJ, Accardo PH, Vining EP, et a1: Primitive Ref7e:x Profile. Baltimore, MD, University Park Press, 1978. 6. Amiel-Tison C: A method for neuro-logic evaluation within the first year of life. Cut?" Probl Pedialr 1976;7:471-510. 7. Milani-Comparetti A, Gidoni EA: Pat-tern analyses of motor development and its disorders. Drl' Med Child Neurol 1967;9:625-630. r Medical Equipment Leasing 114 - Find out how sensible it really is! High technology equipment allows you to provide quality medical care right from your office. But it comes with some expense and risk. What makes diagnostic and economic sense today may not in five years. Bell Atlantic TriCon Medical Finance can answer the difficult questions with a variety of finance options that help you acquire what you need economically. With our leaSing program you can SMS SERVICES, INC. have the use of state-of-the-art medical equipment without having to second guess the future. At the end of the lease period, you can decide if the equipment is still valuable to you. If it is, you can purchase it at a pre-determined price. If it is not, simply return it to Bell Atlantic. We know how to take the pain out of equipment acquisition. Call for a comparative quote and special low member rates. A member service offered through @ Bell Atlantic TriCon Leasing Medical Finance For financial pain relief call: 1-800-322-0444 Wisconsin Medical Journal. March 1990 i I , c' , , ; i l . I , I 

Implications of a NICU Perinatal Follow Through Program for the Primary Care Physician

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Implications of a NICU Perinatal Follow Through Program for the Primary Care Physician

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