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Mapping the Journey to Optimal Health for NICU Graduates

September 12, 2017
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Babies born preterm need ongoing, specialized care to help them thrive after discharge from the hospital. Innovative programs are being designed to ensure that they get that care.

In the early 1980s, only 10 percent of infants born before 28 weeks of gestational age survived to be discharged from the hospital. By 2015, 65 percent of babies born before 27 weeks were surviving.

Those statistics and others like them speak to remarkable advances in neonatal intensive care. But they have also led to an increasingly urgent question:

What should we do after a critically ill infant survives and is discharged from the hospital?

Since the 1970s, when graduates of neonatal intensive care units (NICUs) were first followed in specialized programs, it has become clear that they face more future difficulties than their full-term peers. Many have sensory processing or language problems. Half of children with cerebral palsy are born preterm, for example. Preterm babies with bronchopulmonary dysplasia (BPD) have trouble eating early in their lives and are at greater risk of asthma and obstructive lung disease later.

Despite calls from the Eunice Kennedy Shriver National Institute of Child Health, the American Academy of Pediatrics, the American College of Obstetrics and Gynecology and others for NICU follow-up best practice guidelines, no consensus about how to handle these children exists.

“A variety of studies across medical fields tells us that clinical practice lags 10 to 20 years behind research,” says Iona Novak, PhD, head of research at the Cerebral Palsy Alliance Research Institute, University of Sydney (Australia), who has helped create international early detection and intervention guidelines for cerebral palsy. “That’s a whole childhood. There are so many barriers: time, knowledge, funding, training. That’s why what Nathalie Maitre is doing at Nationwide Children’s Hospital is so important. She’s leading an international change in practice.”

“NICU follow-up is not the most glamorous job, and it’s not a revenue generator for a hospital. The people involved in it come home with gummed-up Cheerios in our hair .... We are passionate, though, because we know we can change the trajectories of these kids for the better.” – Nathalie Naitre, MD, PhD

Nathalie Maitre, MD, PhD, is a neonatologist and director of NICU Follow-up Programs at Nationwide Children’s. When she took the position in 2015, she began a large-scale project to implement the use of evidence-based care and tools for infants at risk for developmental problems. More than two years later, the protocols, best practices and “journeys” that she and her colleagues have created and implemented are helping NICU graduates every day.

“NICU follow-up is not the most glamorous job, and it’s not a revenue generator for a hospital,” says Dr. Maitre. “The people involved in it come home with gummed-up Cheerios in our hair from administering the Bayley Scales of Infant and Toddler Development and spit-up on our clothes from working with toddlers who have feeding aversions. We are passionate, though, because we know we can change the trajectories of these kids for the better.”

And it is possible for others to do it too.

BUILDING AN INNOVATIVE NICU FOLLOW-UP PROGRAM

NICU Follow-up Programs at Nationwide Children’s have more than 5,000 patient visits every year in three large outpatient clinics: the Early Developmental Clinic, the BPD Clinic and the Neonatal Abstinence Syndrome Clinic. Each child has unique challenges, but Dr. Maitre wanted to create a “common developmental journey” for them that would allow for best outcomes.

“‘The Journey to Best Outcomes’ is actually this hospital’s overall strategic plan, and we have always been supported in bringing the philosophy of comprehensively caring for these high-risk infants and their families into our follow-up programs,” she says.

Dr. Maitre began with 11 working groups. Each conducted a rigorous review of an aspect of Nationwide Children’s NICU follow-up – how neurodevelopmental exams are administered or the resources a “complex care” child might need outside of the hospital – and reported on what was working and what needed to change.

It was a time-consuming process, says Teresa Borghese, CNAP-AC, pictured left, who helped create the guidelines for complex care follow-up.

“Follow-up really can be the happy part after the NICU – children have survived, and you can help them develop as normally as possible and reach their highest potential,” she says. “You cannot do that unless you have a firm grasp of best practices and how your program can implement them.”

Certain changes came quickly. Like many other hospitals, Nationwide Children’s was following children until they were 2 years of age. Dr. Maitre extended it to 3. That extra 12 months is often when autism, attention deficit hyperactivity disorders, problems with emerging executive function and other developmental issues become obvious. Continued surveillance allows the specialized NICU follow-up team to intervene and refer children as soon as those conditions emerge.

Over months, the work groups helped develop what they came to call “journeys.” Those are the paths – the appointments, screenings and possible referrals – that every child was likely to need, along with the duties that each member of the team was expected to perform.

The default journey involves appointments with neurological exams; in addition, there is a General Movement Assessment (GMA) at 3 to 4 months, and the Bayley Scales of Infant and Toddler Development (BSID) at 9 to 12 months, 22 to 26 months and 33 to 36 months.

That’s only the default journey of assessments. A child’s family may need a social worker’s help to access community services. A child with BPD may need appointments to address feeding and medication. An early abnormal GMA triggers an extra visit to the Early Cerebral Palsy Program, in an effort to diagnose and intervene as soon as possible. BSID scores can trigger referrals to occupational, speech and physical therapists.

An operations manual lays all of this out. It continues to change as new research becomes available, and it now runs to 300-plus pages. The clinic team plans to publish it in a peer-reviewed journal so others can benefit from it as well.

“The journey is not necessarily guided by a child’s medical condition, though that is part of it,” says Dr. Maitre. “It is guided by who they are as a child in the context of their family and community. We need to understand and address all of that to give children a chance at the best outcome.”

Dr. Maitre also worked on developing or strengthening relationships with other hospital subspecialties, so families could feel secure in their transitions of care to neurologists, pulmonologists, behavioral health experts and others.

A child’s best journey occurs when families are comfortable and care appears seamless to them, Dr. Maitre says.

TARYN'S JOURNEY

Taryn Cook was delivered at 27 weeks gestational age, to a birth mother who did not feel she could care for a baby with special needs. Taryn had experienced the most severe type of intraventricular hemorrhage and was diagnosed with BPD, retinopathy of prematurity, apnea of prematurity and, ultimately, cerebral palsy.

Taryn was adopted by Sarah and Doug Cook, who brought her to central Ohio and the Nationwide Children’s care area after her NICU discharge at about 14 weeks of age. For many reasons, Taryn’s care was disjointed in her first months.

“I had this huge list on a legal pad of everyone I needed to contact and all the services I needed to coordinate in order to care for a special needs baby,” says Sarah. “We were relying in part on Taryn’s original hospital for care as well. It wasn’t until we found a pediatrician who was comfortable caring for her and working with Nationwide Children’s clinics that we really felt nothing was going to fall through the cracks.”

Sarah says she began to feel a “regularity of care:” appointments not based on problems, but when Taryn needed them developmentally; information and education given in a planned, progressive way at those appointments; encouragement that, as Taryn’s parents, Sarah and Doug could make (and were making) important contributions to their child’s health.

A particular point of demarcation was Taryn’s diagnosis with cerebral palsy at about 12 months of age. Sarah was told by others that it was too early for such a diagnosis, but research in the last few years shows that diagnosis as early as 6 months is possible. It can also help a family access needed services earlier.

“Even though an official transition to Nationwide Children’s Comprehensive Cerebral Palsy program won’t occur until Taryn turns 3, Dr. Maitre and others have begun preparing the Cooks. Taryn also has been able to enroll in one of several National Institutes of Health-funded cerebral palsy research studies at Nationwide Children’s (see sidebar).

“We have already seen improvement, especially in the way Taryn uses her left arm and hand,” Sarah says. “She is doing wonderfully, and we firmly believe it is because of the care she has received.”

WHAT INSTITUTIONS CAN DO

Nationwide Children’s and other large tertiary care pediatric hospitals have an advantage in infrastructure and staffing when trying to create a multidisciplinary NICU follow-up program.

Even if there’s no broad national agreement on best practices, every institution should consider standardizing their practices internally, says Andrea Duncan, MD, medical director of the Neonatal High-Risk Clinic at University of Texas at Houston McGovern Medical School. Dr. Duncan, inspired in part by Dr. Maitre, is now working on her institution’s NICU follow-up manual.

“Depending on what the program looks like, it could be 20 pages with one journey,” says Dr. Duncan. “If you want to set your people up for success, if you want evidence-based practice, you have to say, ‘this is what we do and this is why we do it.’”

Dr. Maitre and her colleagues say following a few other basic steps can start any institution on their own journey:

  • Find a champion. A person who realizes the complexities of neonatal follow-up care is likely already at your institution. Give that person the opportunity to research best practices and lead colleagues.
  • Identify providers. Pediatricians, nurse practitioners, and therapists often can provide specialized care if they demonstrate interest in the complexities of neonatal follow-up. Large institutions can provide additional training to medical professionals to foster this.
  • Use what you have. A pediatric institution likely houses many subspecialties. The NICU follow-up champion should try to build bridges with them for optimal care inside the follow-up program and to make sure that families are comfortable once the inevitable transition of care happens.

None of this is exactly easy, and it does take a commitment of resources, Dr. Maitre emphasizes. But any number of studies show that appropriate early management of these high-risk children can actually reduce the need for further hospitalization and other expenditures.

Besides, it’s the right thing to do.

“It’s really our responsibility to give these children their best chance at a good life,” says Dr. Maitre.

For more on how Dr. Maitre and her team incorporate research, read Integrating Research Into the “Journeys”.

References:

  1. Gong A, Johnson YR, Livingston J, Matula K, Duncan AF. Newborn intensive care survivors: a review and a plan for collaboration in Texas. Maternal Health, Neonatology, and Perinatology. 2015 Oct 19; 1:24.
  2. Novak I, Morgan C, Adde L, Blackman J, Boyd RN, Brunstrom-Hernandez J, Cioni G, Damiano D, Darrah J, Eliasson AC, de Vries LS, Einspieler C, Fahey M, Fehlings D, Ferriero DM, Fetters L, Fiori S, Forssberg H, Gordon AM, Greaves S, Guzzetta A, Hadders-Algra M, Harbourne R, Kakooza-Mwesige A, Karlsson P, Krumlinde-Sundholm L, Latal B, Loughran-Fowlds A, Maitre N, McIntyre S, Noritz G, Pennington L, Romeo DM, Shepherd R, Spittle AJ, Thornton M, Valentine J, Walker K, White R, Badawi N. Early, Accurate Diagnosis and Early Intervention in Cerebral Palsy: Advances in Diagnosis and Treatment. JAMA Pediatrics. 2017 Jul 17. [Epub ahead of print]
  3. Maitre NL. Neurorehabilitation after neonatal intensive care: evidence and challenges. Archives of Disease in Childhood Fetal and Neonatal Edition. 2015 Nov; 100(6): F534-40.
  4. Chorna O, Heathcock J, Key A, Noritz G, Carey H, Hamm E, Nelin MA, Murray M, Needham A, Slaughter JC, Maitre NL. Early childhood constraint therapy for sensory/motor impairment in cerebral palsy: a randomised clinical trial protocol. BMJ Open. 2015 Dec 7; 5(12).

Photo credit: Nationwide Children’s