Closing the Gap for the Littlest Patients Who Need Long-Term Care

Great progress has been made, thanks to medical and technological advances, in saving babies who are born with a very low birth weight. However, these infants are still at high risk for later difficulties, including behavioral, learning, neurological, developmental, and growth problems. In fact, 30 to 50 percent of children born with a very low birth weight may have developmental or motor challenges by the time they reach their second birthday.

And there may be longer-term behavioral and psychological impacts related to prematurity. Children born very preterm may have more difficulties with planning, with organizing, and with focusing and attention than children born full term. Since some of the earlier challenges may not be noted in usual pediatrician visits, there may be a delay in identifying problems and making referrals to additional resources and services.

The good news for parents and families is that identifying the early signs of developmental, behavioral, language, or motor challenges early can mitigate long-term problems. That’s why outpatient High Risk Infant Follow-up (HRIF) programs are important for assuring comprehensive follow-through care for infants after discharge from the Neonatal Intensive Care Unit (NICU). In HRIF clinics, children are seen by an interdisciplinary team that may include developmental pediatricians and neonatologists, occupational and physical therapists, and others who can recognize the early signs of developmental, behavioral, language, or motor challenges.

“As more babies born very early or with very low birth weight survive, there’s been an increasing amount of focus on getting them to follow up programs after leaving the hospital,” says Vidya Pai, MD, MS Epi, a neonatologist at Lucile Packard Children’s Hospital Stanford. This care involves identifying developing issues that may be improved with early intervention or medical services, and assuring referral and treatment for concerns as they arise.

The bad news is that not all parents are connected to these programs. In California we are fortunate. California Children’s Services (CCS) has provided that every baby born weighing less than 3.3 pounds or more than eight weeks early should be referred to one of the nearly 70 HRIF clinics in California when they are discharged home from the NICU. CCS provides for a series of HRIF visits for children until they’re age 3 so that developmental, neurologic, growth, and other concerns can be identified and intervention provided. But a few years ago, Susan Hintz, MD, MS Epi, medical director of the Fetal and Pregnancy Health Program at Packard Children’s and principal investigator of California’s High-Risk Infant Follow-Up Quality of Care Initiative, found that these referrals were happening only about 80 percent of the time.

Hintz has been leading the charge within the California Perinatal Quality Care Collaborative (CPQCC) at Stanford and in partnership with CCS to assure coordinated follow-up for preemies after they go home from the hospital. The fact that 20 percent of babies born with a very low birth weight were not being referred to HRIF programs—although 100 percent were eligible—meant that these children and families were not being connected to the resources and expertise they might need. This prompted a quality improvement effort beginning in 2013 to enhance rates of referral to HRIF programs across California. The initiative, launched through the CPQCC, involved intensive efforts with NICU and HRIF staff throughout the state to better understand barriers and challenges to referral, create site-specific tools to improve identification and referral processes through the CPQCC, and further educate about CCS eligibility criteria for HRIF.

But how successful was it in ensuring that vulnerable infants were referred to HRIF programs? Hintz and Pai decided to find out. They set out to determine rates of HRIF referral for babies born with very low birth weights before and after the quality improvement initiative, and study clinical and NICU factors associated with referral patterns, using data from the linked NICU and HRIF data sets in the CPQCC.

In analyzing data from the 140 NICUs, Pai and Hintz found that referrals had improved substantially after the initiative and that much of the variation in referral patterns across the state had been nearly eliminated. Their research also revealed some important benefits to quality improvement: Some sociodemographic disparities in referral across the state had been significantly reduced because of the initiative.

For Pai, the research project captures why she became interested in this field: improving the lives of newborns and closing gaps in access to quality care. Before coming to California, she was a pediatric resident in Philadelphia, where the infrastructure didn’t exist to track infants after discharge and make sure they were connected with follow-up resources.

“It was unfortunate to see how many families didn’t realize that supportive programs existed, given how high-risk this group of infants is,” she says. Here in California, “we’re in a unique position to have this statewide collaborative and the opportunity to collect data on all high-risk infants and implement an intervention to improve access to care after they leave the NICU.”

And while disparities in follow-up care across sites were significantly reduced—95 percent of very low birth weight infants are now being referred—some hurdles remain. So Pai, Hintz, and others working with Stanford researchers in the CPQCC are doing further work to drill down into which groups are at greatest risk of not making it to appointments after being referred, and in which areas of California. They’re also evaluating factors that could point to barriers to HRIF access for families, such as how far they live from the follow-up clinic, whether they live in a rural area, and other challenges that could prevent them from getting to the visits. “I feel strongly that we still need to level the playing field so that all children born anywhere in the state have access to the same services,” says Hintz. “We need to make sure that, regardless of where they’re born, children have the same access to and can benefit from this wonderful CCS program.” Learn how Packard Children’s Neonatology team provides medical, surgical, and support services for infants, from routine to highly complex care.