As medical advances continue to boost survival from once fatal or life-shortening child-onset diseases, leaders at hospitals — both adult and pediatric facilities — increasingly face a dilemma. Where is it most appropriate to treat patients who are nearing their 20th birthdays and sometimes have aged well beyond that mark?
Determining the optimal location can be daunting even for the doctors involved. Should a 33-year-old man with severe cerebral palsy and developmental delays be cared for at a children’s or an adult facility? What about an obese 17-year-old girl who already is coping with hypertension and type 2 diabetes?
Patients ages 18 and older fill 3 percent of the beds at pediatric academic medical centers, and their numbers have been increasing in recent years, according to a 2011 study in the journal Pediatrics. Age is a good starting point to steer referrals, says Benjamin Kinnear, M.D., an assistant professor of hospital medicine at Cincinnati Children’s Hospital Medical Center.
“But I think the people who use just age are really missing the bus,” he says. “I think one of the big questions we have to ask is, ‘Regardless of age, where are these patients going to get the best care, and where are they going to feel the most comfortable?’ ”
Kinnear, who helped to author a December 2015 commentary in JAMA Pediatrics outlining some of these age-related trends, is among those who argue that there is not a one-size-fits-all solution for hospital leaders. In some cases, hospitals have established programs with a designated clinic or physical space to serve these transitional age groups. In others, structured referral or consulting arrangements have been established or strengthened between sometimes unaffiliated hospitals.
As these programs have grown, it’s become apparent that how they’re structured depends upon myriad local dynamics, including how rural or urban the community is, the number of nearby hospitals, their affiliations and whether any are pediatric facilities, says Rebecca Block, who until late 2015 served as director of research and advocacy for Critical Mass, an Austin, Texas-based nonprofit organization serving adolescents and young adults with cancer.
But, she says: “Whether you are in an adult or a pediatric facility, you need a partner on the other side. Your intention has to be that bridge, whatever that looks like for where you are and who you are and how your facility functions.”
Care at the crossroads
The adult congenital heart clinic based at Intermountain Primary Children’s Hospital was created roughly a decade ago to help foster such age-related transitions. As patients live well into adulthood, they need to learn how to assume charge of their own health care — from making appointments to making decisions around sexuality and reproduction — says Jayson Argyle, administrative director for cardiovascular and imaging services at Primary Children’s in Salt Lake City.
Parents are understandably “very hands on” in helping these adolescents, Argyle says. “They are at all of the visits, they are helping with the medication,” he says.
The program enables the patient to start transitioning, typically at age 15, beginning with a doctor's visit that includes the adolescent’s pediatric cardiologist and an adult specialist.
Conversely, adults with some diagnoses such as acute lymphoblastic leukemia might clinically benefit at a children’s hospital, says Archie Bleyer, M.D., a clinical research professor at Oregon Health & Science University in Portland and a longtime researcher into adolescents and young adults with cancer. “That is a very current issue — physically, where should they be?” Bleyer says.
Because this type of leukemia is common in childhood, pediatric doctors over many years have honed and become accustomed to delivering the highly complex drug treatment regimen involved, Bleyer says. But the doctors, nurses and other clinicians might express discomfort at caring for a 30-year-old alongside far younger patients, he says.
At this point, there’s no national standard for when a patient is too old to be treated at a children’s hospital, and the cutoff at facilities appears to be drifting upward to at least age 21 and sometimes 25, Kinnear says. [Programs for adolescents and young adults — a population the National Comprehensive Cancer Network defines as ages 15–39 — can extend to patients even older.]
At Cincinnati Children’s, adult patients are typically no older than the late 20s, Kinnear says, although “most days of the week we have somebody in their early to mid-30s who is also here.”
In one extreme case, a 60-something patient was admitted because Cincinnati Children’s had a unique piece of surgical equipment. Sometimes there are nonmedical considerations, such as patients in their 20s who have terminal cancer prognoses.
“Is it worth transitioning them to adult providers for their last few years of care versus staying with a team and a clinic and a hospital that they know and are comfortable with?” Kinnear asks.
Building treatment bridges
With advancing years, patients can develop high blood pressure, diabetes and other conditions that can complicate their care. In the 2011 Pediatrics study, at least 80 percent of patients ages 18 and older had a chronic condition, compared with 48 percent of pediatric patients, according to findings based on admissions data from 1999 through 2008 at 30 academic children’s hospitals. The hospital mortality rate also was higher in those older than 21 — 1.8 percent, compared with 1.1 percent among patients 18 to 21 and 1 percent in those younger than 18.
Another study, which focused on care of the transitional age group in pediatric intensive care units, also identified a difference in mortality. Patients in their 20s had twice the chance of dying compared with those 15 to 18, according to a one-year analysis of 67,629 admissions involving 70 pediatric intensive care units. While the data didn’t reveal the underlying cause, one factor might be the complexity of patients who still are being treated into their 20s by pediatric physicians, says Jeffrey Edwards, M.D., an author of the 2013 study in JAMA Pediatrics.
While patients with a single diagnosis such as cystic fibrosis or congenital heart disease might have a clearer referral path into the adult system, it can be more difficult to find an adult physician for patients with multiple conditions, says Edwards, a pediatric intensivist and an assistant professor of pediatrics at Columbia University Medical Center in New York City. Consider a young adult who was born prematurely with related brain damage and who requires a mechanical ventilator and a feeding tube, he says.
“When they hit 18 or 21, it’s not the kind of normal thing that a general internist sees in their common practice,” Edwards says. “I’m not surprised that they’re hesitant to take them on as their physician.”
To better coordinate care, Cincinnati Children’s started a hospital medicine adult care service in 2014, Kinnear says. The hospital’s policy is for any patient 25 and older to be referred to the service, which is staffed by physicians like Kinnear who are trained in internal medicine and pediatrics. But many of the consults involve patients who are younger, and sometimes much younger if they develop a condition associated with adults.
“I’ve been consulted on someone who is 18 years old because they thought that this patient had gout,” Kinnear says.
Beginning in the last year or so, the adult congenital heart disease clinic based at Primary Children’s — which works in conjunction with the University of Utah and Intermountain Healthcare — has added twice-monthly meetings to triage adult patients before they are admitted for surgery or a procedure, says Arvind Hoskoppal, M.D., who directs the clinic. Individual cases are reviewed by all the physicians and other specialists involved to determine if the patient would receive optimal care at Primary Children’s or at one of the group’s adult facilities.
Their own space
At Boston’s Tufts Medical Center, hospital leaders have decided to designate a physical space for adolescents and young adults with cancer, opening the Reid R. Sacco AYA Cancer Program in 2013. Between 80 and 100 patients ages 15 to 39 are served by the program, which includes its own clinic, designated exam rooms and waiting area where patients can visit with their peers, says Susan Parsons, M.D., the program’s founding director.
One of the program’s major goals is not to lose patients after treatment ends and make sure they keep up with checkups amid the busy years of high school, college and early adulthood, Parsons says. That requires a fine balance of age-appropriate education based on the patient’s mindset, she says.
“Some people are panic-stricken, and they need to be comforted, and they need to have their fears allayed,” Parsons says. “While others need to be convinced that just because active treatment is over doesn’t mean that we don’t have to continue to be vigilant about the cancer and also the late effects of the treatment for that cancer.”