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Bringing care into the home improves health of fragile infants
Premature and low-birth-weight babies run up some of the nation’s highest hospital bills. Four of the 10 most expensive conditions treated in hospitals involve health complications in infants. For those who survive long stays in neonatal intensive care, the first year typically is marked by emergency department (ED) visits and admissions to the pediatric intensive care unit (ICU). Aside from those costs, routine well-baby care runs nearly $10,000 for the first year. (For an overview of the 10 most expensive types of hospitalization, see "Conditions with the Highest Hospital Charges in 1997," below.)
|Conditions with the Highest Hospital Charges in 1997|
|Principal diagnoses||Mean charges||Mean length of stay (in days)|
|1. Respiratory distress syndrome (infant)||$68,000||24.6|
|2. Spinal cord injury||53,000||15.9|
|3. Prematurity (short gestation) and birth weight||50,000||21.7|
|4. Heart valve disorders||48,000||9.1|
|6. Heart defects (cardiac and circulatory congenital anomalies)||42,000||7.9|
|7. Lack of oxygen in infants (Intrauterine hypoxia and birth asphyxia)||39,000||12.7|
|8. Central nervous system infections other than meningitis||39,000||13.6|
|9. Aortic, peripheral, and visceral artery aneurysms||38,000||8.9|
|Note: Diagnoses in bold are also among the longest lengths of stay in the hospital.|
|Source: Elixhauser A, Yu K, Steiner C, Bierman AS. Hospitalization in the United States, 1997. Rockville, MD: Agency for Healthcare Research and Quality; 2000. HCUP Fact Book No. 1; AHRQ Publication No. 00-0031. ISBN 1-58763-005-2.|
It is possible, however, to reduce those costs by more than 30% and improve a high-risk infant’s health in the bargain. The key is to provide comprehensive service, including acute care, 24 hours a day.
A pediatric follow-up team at Children’s Medical Center of Dallas achieved such a reduction with a group of infants born at Parkland Memorial Hospital, the public facility for Dallas County. The infants either had birth weights of less than 2 pounds, 3 ounces or weighed up to 3 pounds, 5 ounces and required a ventilator within 48 hours of birth. "These babies often receive limited and fragmented care because the family’s ability to access care is limited," says R. Sue Broyles, MD, neonatologist and assistant professor at the University of Texas Southwestern Medical Center.1
To be effective, a comprehensive service package must include a heavy portion of psychosocial support plus acute and routine care. The psychosocial component is pivotal since many low-birth-weight babies are born to poor, inner-city mothers. By providing an umbrella of services for mother and infant, Broyles and the comprehensive follow-up team have reduced intensive care days by 42% a year. Other team members include a pediatrician, two pediatric nurse practitioners, and a physician’s assistant.
Parenting education is a critical piece because one-third of the mothers are teen-agers who lack good parental role models and could benefit from additional parenting as well. "The education is ongoing," explains Broyles. "We review the material at every single appointment, and finally it starts to sink in." (For a more detailed comparison of comprehensive and routine follow-up services, see related story, p. 16.)
Although comprehensive care is costly, Parkland Memorial has supported it from day one. "The dollar cost savings are measurable. But the monetary figures can’t begin to measure the trauma when a baby goes into the ICU and has a ventilator and a catheter placed. Even prolonged hospitalization on a regular pediatric ward has an effect on a child’s development," she observes.
More than 95% of the high-risk babies are eligible for Medicaid "even by Texas standards, which are some of the most rigid," Broyles notes. One of the challenges the hospital has faced is the mismatch between the comprehensive program services and the Medicaid reimbursements for pediatric care. However, persuasive data from the comprehensive follow-up study have helped win Medicaid acceptance for designation of the team as primary care providers. No doubt those data would impress any actuary, whether in the public or private sector: In the infants’ first year, recipients of comprehensive care averaged 48% fewer life-threatening illnesses than did recipients of routine care. The comprehensive group had 57% fewer ICU admissions. Comprehensive follow-up costs averaged $6,265 per infant, and routine follow-up averaged $9,913 per infant.
If you offer it, can they come?
While the comprehensive program might appear lavish, eligible families do not flock to it. Often, the hardships that qualify them for the services keep them away. "Most of the mothers live in the chaos of poverty; they have low educational levels and poor decision-making skills," says Sally Adams, MS, RN, CPNP, the team’s nurse practitioner.
Fewer than 50% of the mothers seek prenatal care in the first trimester. If they are seen at all, it’s usually late in pregnancy and then only for one visit. Most are Hispanic or African-American, with less than 11 years of education. Many are illiterate, while others speak only Spanish. Fifty-five percent are single, and 25% don’t have a phone in their home.
"Even if you offer 24-hour access to care," Broyles observes, "it doesn’t do any good when [the mothers] don’t have a phone to call you or transportation to visit the clinic. We tell them to stay friends with a neighbor who has a phone. We can give them $10 now and then to pay a friend for gas when they need a ride to the clinic."
Another barrier to access and timely care is some Hispanic women’s propensity for relying on men to make decisions. Thus, a minor problem can escalate to crisis level as the mother waits for the father to return from work or for a male relative to decide whether the child needs professional care.
The young women are further hindered by their inexperience in parenting and lack of confidence in recognizing signs of trouble in their vulnerable infants. Although clinicians stress the warning signs — diminished appetite, increased crying, difficulty in awakening the baby — many young mothers don’t absorb the information until they’ve heard it several times.
"We have two patterns," says Broyles. "Some overreact; others fail to recognize the seriousness of trouble signs. We’d rather have them overreact, because a problem like a runny nose might be minor for a full-term infant, but it can quickly become life-threatening for a high-risk baby."
Once mothers see how much the services can help them, most use them effectively. And through that process, they improve their own decision-making and problem-solving skills. On average, the comprehensive group had 20 non-ED contacts per infant during the first year, while the routine group had 7.2 non-ED contacts. Those include clinic visits, telephone calls pertaining to infant care issues, home visits, and contacts prior to discharge from the nursery.
Clinicians improve the utilization of emergency services by rigorously coaching their clients on the procedures to follow when an infant shows signs of problems. A daytime phone call or clinic visit often saves a nighttime dash to the ED. When a clinician knows that a client is en route to the ED, she alerts the ED staff, and they treat the child as high priority.
However, it sometimes takes several long waits in the ED before a mom learns the value of contacting her clinician before rushing to the ED. (To learn more, see "Better care for infants takes hands on with mom," p. 17.)
Babies are enrolled in the comprehensive program for two to three years. They see the same clinician throughout, beginning with a home visit shortly after discharge from the hospital. That continuity and the close bonds between the clinicians and their clients are largely responsible for the superior results of comprehensive compared to routine follow-up.
Clinicians have caseloads of 20 to 30 families. "It’s a different kind of relationship than we see in other practices. In fact, the mothers don’t like going to other practices at first after their babies graduate from the program because they’ve learned to trust us so much," Adams says. So deep is the trust that it’s not uncommon for a recently graduated mom to call one of the clinicians just to check out medical advice from a new provider.
Each clinician’s personality shapes the interaction with her clients. Some are task-oriented, while others are nurturing, Adams says. "I tell them I’m their coach, chief cheerleader, quarterback, and sometimes, even their mother."
The clinicians learn a client’s family dynamics well enough to help mother and child realize some of their potential for productive lives. "I fuss at them sometimes when they’re not doing the right thing for themselves or their baby," Adams admits. In the few instances of personality clashes, a clinician arranges a switch to a teammate.
Elizabeth Heyne, MS, PA-C, the team’s physician’s assistant, is fluent in Spanish, a great asset for the non-English-speaking mothers. "In the comprehensive service program, we include everything we can possibly think of that could help the mother," she says. "After all, when taxpayers spend $80,000 to $100,000 on these infants before they leave the hospital, it makes sense to give them first-class follow-up care."
Reaching out to lower pregnancy rates
Program activities reflect the project’s goal of reducing repeat-pregnancy rates among the teen-age clients. Toward the secondary goal of lowering teen pregnancy rates in the local community, some of the program graduates visit seventh- and eighth-grade classes to tell girls the reality of young motherhood. "The mothers are dynamite," Heyne says. "They make a convincing case for abstinence in the younger girls."
Through life planning, counseling, and mentoring, the project addresses three predictors of repeat pregnancy:
• Semihomelessness. Troubled mother-daughter relationships often lead mothers to kick adolescent girls out of the home either before the girl conceives or after news of the pregnancy surfaces.
• Truancy. Sexual activity is one of the prime pastimes during the hours spent away from school.
• Conflicted relationships with family. Teen-age girls whose self-esteem is assaulted within their families look for it elsewhere by exchanging sex for a sense of belonging.
It appears that efforts like this one are making an impact. According to the National Center for Health Statistics in Hyattsville, MD, the teen birthrate declined 18% between 1991 and 1998. That doesn’t mean, however, that the numbers of high-risk infants will follow suit.
"We’ll still have multiple births and mothers with diabetes or high blood pressure. And we have not been able to cure toxemia or preeclampsia," Heyne argues.
The ethical question remains. At what stage should hospitals save premature babies: At 25 or 26 weeks? At 24 or 23? If every hospital decided to save the 23-week infants, Heyne notes, there would be a huge number of high-risk neonates.
1. Broyles RS, Tyson JE, Heyne ET, et al. Comprehensive follow-up care and life-threatening illnesses among high-risk infants: A randomized controlled trial. JAMA 2000; 284:2,070-2,076.