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The discharge of a preterm infant from neonatal intensive care is a developmental milestone, yet it also marks the beginning of a challenging course of medical care from a complex system of outpatient providers. This article addresses the multiple strategies and resources that exist to help pediatricians coordinate health care and optimize quality of life for these children and their families
Prematurity and congenital anomalies or syndromes are the most common reasons why newborns require hospitalization in a neonatal intensive care unit (NICU). Some infants are hospitalized for days to weeks, while some remain in the NICU or rehabilitation facilities for several months. At the completion of a lengthy hospitalization, clinicians must prepare parents to provide care at home, and to navigate outpatient follow-up in order to ensure a safe and successful discharge.
Celebrating a NICU discharge for high-risk infants is a major milestone, yet optimizing outpatient continuity of care for medically complex infants is challenging. Many such infants require close monitoring of growth and nutrition, management of medications and durable medical equipment, and early recognition of respiratory illnesses and other infections. Many also require ongoing care from pediatric subspecialists, including neurodevelopmental care. Delivering high-quality continuity of care for these infants is complicated by the lack of standardized guidelines for optimal follow-up.1
In this discussion we highlight common logistical barriers and ethical complexities encountered by the general pediatrician whose goal is comprehensive care for NICU graduates. Special emphasis is placed on preparing families for predictable short- and long-term outcomes for these infants.
The medical home model is defined by the American Academy of Pediatrics (AAP) as accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective care delivered by a well-trained primary care physician.2 Medical homes may particularly benefit high-risk infants and those families with additional risk factors for unmet health care needs. Families connected to a quality medical home are more likely to receive respite care, transportation, and rehabilitation services.3 In the National Survey of Children with Special Healthcare Needs, approximately half (49%) require assistive technologies; children most likely to get the necessary technologies are those with quality medical homes.4,5 Children with combinations of impairments, as is the case with many children with genetic syndromes, may particularly benefit from quality medical homes.6,7 The supportive services available in a medical home can assist families in navigating insurance issues, accessibility, and financial burdens.5
Although the medical home model is ideal for providing medical care to high-risk infants, most US pediatricians today do not yet have the resources in information technology, laboratory facilities, or quality-of-care reporting needed to qualify as a medical home.8 Some pediatricians may feel unable to care for medically complex infants because of limited funding and inadequate medical staff in their offices or because of perceived lack of training in developmental pediatrics and care coordination.9,10 In a survey of general pediatricians, over half believed that they did not adequately integrate medical care with the plans of other providers or agencies, or with families’ needs for nonmedical services.9
Multiple strategies and resources exist for the general pediatrician who cares for infants with special health care needs. For instance, in 2012 the AAP published a clinical report to guide pediatricians with the hospital-to-home transition for children with dependence on technologies.11 The 2008 AAP report can also assist primary care pediatricians with navigating the process for evaluating the need for and securing funding for assistive technologies.12 A staff member dedicated to care coordination can increase access to services for families.13 In many settings, care coordination is most successful when it is done through partnership with families.
The AAP and the Institute of Medicine have addressed the importance of generalist-specialist communication in reference to chronic care for children with special health care needs.2,14 General pediatricians often face multiple communication barriers including delays in receiving consultants’ notes, inability to directly speak with consultants, and difficulty coordinating communication among multiple specialists.15 Parents find gaps in communication among their child’s clinicians to be a burden.16 Often parents must serve as the messengers of information among specialists. Some parents are uneasy in this role, but other parents enjoy relaying information to physicians who do not depend on them as their only source for information.16 Integrated clinics that incorporate the medical home and tertiary care centers are one strategy for improving communication and decreasing family burden.17
Geographic location influences access to resources for pediatricians and families of NICU graduates, and is related to local poverty rates, budgets, insurance coverage, and program eligibility. One study found that children with special health care needs consistently received all preventive care within the past 12 months in only 1 of 4 regions of the United States.18 Access to follow-up clinics also varies by state and region. Most neonatal follow-up clinics are associated with academic institutions and large tertiary care centers. Discontinuous preventive care impacts the ability to monitor developmental progress and initiate appropriate services in a timely period. For areas with limited resources, the AAP recommends developing a partnership between NICUs and community physicians to perform developmental assessments of the infant at specific time points in the infant’s growth.1
Promoting optimal neurodevelopment for NICU graduates is among the most important roles for the pediatrician. In 2002, the National Institute of Child Health and Human Development, National Institute of Neurological Disorders and Stroke, and the Centers for Disease Control and Prevention developed recommendations for developmental follow-up of high-risk infants at specific time intervals.1 Infants merit follow-up based on their risk factors for adverse neurodevelopmental outcomes, including those infants born at <1,000 g birth weight and/or <28 weeks’ gestation; infants with hypoxic ischemic encephalopathy or severe hyperbilirubinemia requiring exchange transfusion; and significant family demographic risk factors.1 The American Heart Association has follow-up guidelines for infants with congenital heart disease, with risk stratification based on likelihood for intellectual and developmental delays.19 Infants with concerning findings or family vulnerabilities should be referred for comprehensive follow-up programs. This allows for assessments of the home environment, early intervention referrals, and family support services.
At the time of NICU discharge, long-term neurodevelopmental outcomes are often uncertain. Families may not fully understand their infant’s neurodevelopmental risk factors or how to access resources when there are concerns.13 Currently, there are no national data describing families’ access to neurodevelopmental care or early intervention services. A study of Midwestern metropolitan NICU graduates suggested that families were more likely to use early intervention services if their infant experienced limitations on activities of daily living, if they perceived their infant to have significant medical problems, if services were arranged during the transition to outpatient care, or if their services were coordinated through a NICU follow-up clinic.13 Low family income and inadequate health insurance are consistent barriers to neurodevelopmental follow-up.5,13 Most NICU follow-up programs depend on several sources of funding for development and sustainability, with 81% relying on patient insurance as the primary source. NICU follow-up programs may be considered unprofitable by hospitals due to poor insurance reimbursements and greater long-term versus short-term financial benefits.10
All NICU graduates benefit from periodic developmental assessments by their primary care physician1 (Table). Developmental domains for recommended follow-up include growth, neurologic status, and developmental status at each visit. Growth assessments should account for gestational age. Infant neurologic assessment should include gross motor function, tone, reflexes, cognitive skills, cerebellar function, cranial nerves, and language. The findings of these assessments can guide the primary care physician in activating resources such as early intervention.
The general pediatrician is in a unique position to assess and support families whose children have special health care needs. A NICU hospitalization in most cases requires families to reset their expectations of their first experiences with their infant. Families climb a steep learning curve, adjusting to technical and detailed medical care. On NICU discharge, parents may spend many hours per week providing, coordinating, or managing care for their child. This can have a significant impact on the families’ mental, physical, and financial health; families may feel isolated and experience diminished ability to function.1,20-25 Families of multiple births may struggle to manage the conflicting needs of a child with special health care needs with another child or more without such needs.26
Some parents will have difficulty bonding with their infant, may be less responsive to infant cues, and may be less aware of their infant’s development. A minority may experience depression or posttraumatic stress disorder. Without intervention, short-term infant growth and development may be suboptimal and long-term behavior problems and insecure attachment can occur.27 Over time, the repeated family stressors that accompany recurrent infant illnesses, new medical complications, and developmental transitions can generate “chronic sorrow” or “chronic grief.”20,28 Parents at greatest risk are those whose children have difficult-to-manage behavioral problems and those with intense daily care needs.29,30 Advocating for social supports and adequately trained caregivers to assist the family with ventilators, feeding pumps, and other technical devices can positively impact parents' social participation, sleep, and physical and mental health.31,32 It is also important to reassure families that they do not need to feel guilty or ashamed about their child’s medical conditions.33
Clinicians and families should also be aware that, within a NICU graduate’s first year of life, there might be numerous unexpected costs, particularly immediately following discharge. One study found that direct medical costs for infants of very low birth weight was $10,139 compared with $1,179 for full-term infants within the first year after discharge, with an additional 7-fold increase in child care costs.34 Families may take time off from work or resign indefinitely to meet their infant’s needs, adding further expenses.20 These out-of-pocket expenses may account for up to half a family’s annual income; clinicians must be cognizant of financial burdens encountered by families when planning outpatient care.34
After a NICU discharge, family dynamics and social factors play a significant role in a family’s ability to remain positive in times of adversity.35 A positive home environment has been shown to be protective against poor outcomes in children of extremely low and low birth weight. In the Kauai Longitudinal Study examining developmental resilience, protective factors for resilient subjects included positive temperament, favorable parental attitudes, low levels of family conflict, less life stress, smaller family size, and counseling/remedial assistance.35,36 Other families speak of their great joy in watching their child overcome adversity and surpass their predicted limitations.37 The experience of siblings also varies, and although some siblings may experience depression or behavioral problems, others may enjoy being a caretaker to their brother or sister with special health care needs.38,39 As health care providers we have the least control over a family’s home environment, but we are in a position to learn about and engage relevant resources.
Many parents of NICU graduates may have a good understanding of their infant’s current health care needs, yet have little understanding of the long-term prognosis for health and developmental potential. For those infants who will go on to have long-term medical and neurodevelopmental complications, pediatricians are well positioned to engage families in periodic, longitudinal evaluations of evolving health care needs and the goals for future care. Many families find it beneficial to have written documentation of these goals.40 Families may also benefit from ongoing attention to their access to community resources and social supports over time. As many as half of all children with intellectual and developmental disabilities will live with their parents for most, if not all, of their lives; this has ongoing impact on parental employment, finances, marital stability, and psychologic health.41 It is important to know what opportunities are present in the community for periods of respite for the family, times when they can attend to other needs and know that their child will be receiving high quality care.42,43
When a NICU graduate has severe medical problems or profound neurodevelopmental disability, some families will choose treatment limitations, which may include decisions to decline surgeries, feeding tubes, or cardiopulmonary resuscitation. These families may benefit from the support of a palliative care provider, who can help to maximize quality of life for the child and family as the child’s condition evolves. If the child will enter an education/day care program, clinicians should engage caretakers/teachers in discussions of emergency care plans. The 2010 AAP policy can help pediatricians, families, and schools establish individualized plans for each child, although parents should be informed that school systems vary in their willingness to honor such requests.44,45
Multiple resources exist to assist the general pediatrician in caring for NICU graduates with complex medical problems. Engaging these resources can help to optimize quality of life for these children and their families. Ongoing ethical complexities include adequate funding for medical homes and comprehensive NICU follow-up clinics, access to services across geographic areas, communication barriers to the delivery of high-quality care continuity, and longitudinal evaluations of goals of care for NICU graduates who go on to have significant medical and neurodevelopmental complications.
1. Vohr B, Wright LL, Hack M, et al. Follow-up care of high-risk infants. Pediatrics. 2004;114(suppl 5):1377-1397.
2. Medical Home Initiatives for Children with Special Needs Project Advisory Committee. American Academy of Pediatrics. The medical home. Pediatrics. 2002;110(1 pt 1):184-186.
3. Hamilton LJ, Lerner CF, Presson AP, Klitzner TS. Effects of a medical home program for children with special health care needs on parental perceptions of care in an ethnically diverse patient population. Matern Child Health J. 2013;17(3):463-469.
4. Benedict RE, Baumgardner AM. A population approach to understanding children's access to assistive technology. Disabil Rehabil. 2009;31(7):582-592.
5. Benedict RE. Quality medical homes: meeting children's needs for therapeutic and supportive services. Pediatrics. 2008;121(1):e127-e134.
6. Phelps RA, Pinter JD, Lollar DJ, Medlen JG, Bethell CD. Health care needs of children with Down syndrome and impact of health system performance on children and their families. J Dev Behav Pediatr. 2012;33(3):214-220.
7. Kogan MD, Strickland BB, Blumberg SJ, Singh GK, Perrin JM, van Dyck PC. A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005-2006. Pediatrics. 2008;122(6):e1149-e1158.
8. Zickafoose JS, Clark SJ, Sakshaug JW, Chen LM, Hollingsworth JM(3). Readiness of primary care practices for medical home certification. Pediatrics. 2013;131:473-482.
9. Gupta VB, O’Connor KG, Quezada-Gomez C. Care coordination services in pediatric practices. Pediatrics. 2004;113(5 suppl):1517-1521.
10. Kuppala VS, Tabangin M, Haberman B, Steichen J, Yolton K. Current state of high-risk infant follow-up care in the United States: results of a national survey of academic follow-up programs. J Perinatol. 2012;32(4):293-298.
11. Elias ER, Murphy NA; Council on Children with Disabilities. Home care of children and youth with complex health care needs and technology dependencies. Pediatrics. 2012;129(5):996-1005.
12. Desch LW, Gaebler-Spira D; Council on Children with Disabilities. Prescribing assistive-technology systems: focus on children with impaired communication. Pediatrics. 2008;121(6):1271-1280.
13. Tien C-L, Peterson CA, Shelley MC II. Postdischarge service use by families of neonatal intensive care unit graduates. J Early Intervent. 2002;25(1):42-57.
14. Committee on Quality of Health Care in America. Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press; 2001.
15. Stille CJ, Primack WA, Savageau JA. Generalist-subspecialist communication for children with chronic conditions: a regional physician survey. Pediatrics. 2003;112(6 pt 1):1314-1320.
16. Gulmans J, Vollenbroek-Hutten MM, Van Gemert-Pijnen JE, Van Harten WH. Evaluating patient care communication in integrated care settings: application of a mixed method approach in cerebral palsy programs. Int J Qual Health Care. 2009;21(1):58-65.
17. Cohen E, Lacombe-Duncan A, Spalding K, et al. Integrated complex care coordination for children with medical complexity: a mixed-methods evaluation of tertiary care-community collaboration. BMC Health Serv Res. 2012;12:366.
18. Fulda KG, Johnson KL, Hahn K, Lykens K. Do unmet needs differ geographically for children with special health care needs? Matern Child Health J. 2013;17(3):505-511.
19. Marino BS, Lipkin PH, Newburger JW, et al; American Heart Association Congenital Heart Defects Committee, Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, and Stroke Council. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation. 2012;126(9):1143-1172.
20. Gordon J. An evidence-based approach for supporting parents experiencing chronic sorrow. Pediatr Nurs. 2009;35(2):115-119.
21. Carnevale FA, Alexander E, Davis M, Rennick J, Troini R. Daily living with distress and enrichment: the moral experience of families with ventilator-assisted children at home. Pediatrics. 2006;117(1):e48-e60.
22. Kuo DZ, Cohen E, Agrawal R, Berry JG, Casey PH. A national profile of caregiver challenges among more medically complex children with special health care needs. Arch Pediatr Adolesc Med. 2011;165(11):1020-1026.
23. Brehaut JC, Kohen DE, Raina P, et al. The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers? Pediatrics. 2004;114(2):e182-e191.
24. Gallagher S, Phillips AC, Drayson MT, Carroll D. Parental caregivers of children with developmental disabilities mount a poor antibody response to pneumococcal vaccination. Brain Behav Immun. 2009;23(3):338-346.
25. Gallagher S, Phillips AC, Carroll D. Parental stress is associated with poor sleep quality in parents caring for children with developmental disabilities. J Pediatr Psychol. 2010;35(7):728-737.
26. Bolch CE, Davis PG, Umstad MP, Fisher JR. Multiple birth families with children with special needs: a qualitative investigation of mothers' experiences. Twin Res Hum Genet. 2012;15(4):503-515.
27. Hummel P. Parenting the high-risk infant. Newborn Infant Nurs Rev. 2003;3(3):88-92.
28. Kurtzer-White E, Luterman D. Families and children with hearing loss: grief and coping. Ment Retard Dev Disabil Res Rev. 2003;9(4):232-235.
29. Raina P, O'Donnell M, Rosenbaum P, et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics. 2005;115(8):e626-e636.
30. Robinson LR, Bitsko RH, Schieve LA, Visser SN. Tourette syndrome, parenting aggravation, and the contribution of co-occurring conditions among a nationally representative sample. Disabil Health J. 2013;6(1):26-35.
31. Heaton J, Noyes J, Sloper P, Shah R. Families' experiences of caring for technology-dependent children: a temporal perspective. Health Soc Care Community. 2005;13(5):441-450.
32. Gallagher S, Whiteley J. Social support is associated with blood pressure responses in parents caring for children with developmental disabilities. Res Dev Disabil. 2012;33(6):2099-2105.
33. Morrow AM, Quine S, Loughlin EV, Craig JC. Different priorities: a comparison of parents' and health professionals' perceptions of quality of life in quadriplegic cerebral palsy. Arch Dis Child. 2008;93(2):119-125.
34. McCormick MC, Bernbaum JC, Eisenberg JM, Kustra SL, Finnegan E. Costs incurred by parents of very low birth weight infants after the initial neonatal hospitalization. Pediatrics. 1991;88(3):533-541.
35. Werner E. Resilience and recovery: Findings from the Kauai Longitudinal Study. Res Policy Pract Children's Mental Health. 2005;19(1):11-14.
36. Whitfield MF. Psychosocial effects of intensive care on infants and families after discharge. Semin Neonatol. 2003;8(2):185-193.
37. Kearney PM, Griffin T. Between joy and sorrow: being a parent of a child with developmental disability. J Adv Nurs. 2001;34(5):582-592.
38. Conger KJ, Stocker C, McGuire S. Sibling socialization: the effects of stressful life events and experiences. New Dir Child Adolesc Dev. 2009;2009(126):45-59.
39. Moyson T, Roeyers H. 'The overall quality of my life as a sibling is all right, but of course, it could always be better.' Quality of life of siblings of children with intellectual disability: the siblings' perspectives. J Intellect Disabil Res. 2012;56(1):87-101.
40. Wharton RH, Levine KR, Buka S, Emanuel L. Advance care planning for children with special health care needs: a survey of parental attitudes. Pediatrics. 1996;97(5):682-687.
41. Seltzer MM, Floyd F, Song J, Greenberg J, Hong J. Midlife and aging parents of adults with intellectual and developmental disabilities: impacts of lifelong parenting. Am J Intellect Dev Disabil. 2011;116(6):479-499.
42. Swallow V, Forrester T, Macfadyen A. Teenagers' and parents' views on a short-break service for children with life-limiting conditions: a qualitative study. Palliat Med. 2012;26(3):257-267.
43. Harper A, Dyches TT, Harper J, Roper SO, South M. Respite care, marital quality, and stress in parents of children with autism spectrum disorders. J Autism Dev Disord. 2013. Epub ahead of print.
44. Council on School Health and Committee on Bioethics, Murray RD, Antommaria AH. Honoring do-not-attempt-resuscitation requests in schools. Pediatrics. 2010;125(5):1073-1077.
45. Kimberly MB, Forte AL, Carroll JM, Feudtner C. Pediatric do-not-attempt-resuscitation orders and public schools: a national assessment of policies and laws. Am J Bioeth. 2005;5(1):59-65.
DR BOSS is assistant professor, Division of Neonatology, Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, Maryland. DR HOBBS is clinical fellow in the Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore. The authors have nothing to disclose in regard to affiliations with or financial interests in any organizations that may have an interest in any part of this article.
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