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Professional societies frequently issue clinical practice guidelines in an effort to reduce practice variability and improve care. Surveys, however, have found that generalists and specialist physicians alike prefer to rely on their own experience and the nuances presented by each patient.
“Guidelines try to establish national standards where there’s varying opinions, based on what everyone can agree,” says Scott L. Pomeroy, MD, PhD, neurologist in chief at Boston Children’s Hospital. “As a result, they tend not to be very specific in their recommendations. Once a parameter is promulgated by a society, people may or may not want to follow it.”
As Pomeroy and colleagues wrote recently in the Journal of Child Neurology[C1] (online April 10), surprisingly few guidelines are supported by clinical trial evidence, and guidelines don’t always measurably improve patient outcomes (pain assessment and treatment of seizures in the emergency department being some notable exceptions).
Two recent developments promise to have much more impact on the quality of care. One is the family-centered medical home model. Neurology was among the first Boston Children’s departments to embrace active collaboration with their primary care colleagues. The other development is the launch of standardized clinical assessment and management plans, or SCAMPs. Recently featured in Health Affairs,[VCJ2] SCAMPs are quality improvement models in which care plans can be continually updated based on clinical experience.
Shared, integrated care
In 2009, a group of specialists from Boston Children's Hospital, including Pomeroy and Richard C. Antonelli, MD, MS, a primary care pediatrician and medical director of integrated care, met with primary care providers from Harvard Vanguard Medical Associates/Atrius Health to develop a collaborative care strategy for one of the most common of neurologic diagnoses: headache.
While the majority of pediatric headaches are benign and manageable in the primary care setting, PCPs often have felt the need to reassure families by referring children for imaging tests and specialist appointments that aren’t always needed. To help the collaborative care model succeed, family advisors were partners in designing the Headache Collaborative.
The pilot, involving Boston Children’s and six primary care practices, included educational sessions for PCPs covering headache epidemiology, evaluation and treatment, offered by Anna Minster, MD, of Boston Children’s Department of Neurology. Tools and workflows were jointly developed by families, PCPs and neurologists to support diagnosis and management of children with headaches. PCPs were given access to rapid advice from subspecialists at Boston Children’s—often within 30 minutes—and patients kept headache diaries with pain scales that could be viewed by the entire team.
“Working jointly with PCPs, we took evidence-based guidelines and made them more robust for decision-making,” Antonelli explains. “The goal was to deliver actionable, timely information when and where it was needed—which permits patients to get high quality care in the highest-value setting and in a timely fashion.”
A survey was conducted after the pilot, and of the 22 PCPs who responded, 95 percent felt the program had increased their knowledge of managing headaches, and 85 percent felt it had improved care. Families reported feeling less anxious. Early results showed a shift of follow-up care from the Neurology clinic at Boston Children’s to the primary care medical home.
In another study, Boston Children’s neurologist David Urion, MD, demonstrates that co-located headache care can significantly reduce emergency department and MRI utilization with no adverse effects on outcome. He compared two urban community health center populations: one using co-located care, the other using traditional hospital-based consultations. Over the course of five years, the two groups had roughly the same number of headache cases: 173 in the co-located care group and 169 in the traditional-care group. ED visits differed dramatically, however: 17 in the co-located cohort, 306 in the traditional-care cohort. Only five MRI studies were ordered for the co-located group, all from ED visits, versus 102 in the traditional-care group: 89 generated by ED visits, 10 by neurology providers and 3 by primary care providers. No MRI study in either group had significant pathological findings.
Shared care models are spreading and increasing in scope. ThePediatric Physicians' Organization at Children's (PPOC) and the South Shore Physician Hospital Organization have joined the Headache Collaborative, and a second shared care program for attention-deficit hyperactivity disorder has been launched with the PPOC and the Northeast Physician Hospital Organization at Beverly Hospital.
Although the programs focus on specific diagnoses, the relationships they’ve created have led to collaborations across the spectrum of neurologic disorders. “I anticipate that as new finance models continue to evolve, collaborative care models will flourish,” says Antonelli.
The SCAMP program is a quality improvement platform that starts with current clinical guidelines, if they exist, but allows and even encourages clinicians to diverge from them as they manage individual patients. If they do, they must document their rationale, and the results of their decisions are tracked and used to update the guidelines as needed.
“The reasons that doctors choose not to follow a SCAMP are extremely important information and fuel improvement at a rapid clip,” says SCAMP co-developer James Lock, MD cardiologist-in-chief emeritus at Boston Children’s.
SCAMPs in Pediatric Neurology/Neurosurgery
Although the SCAMP platform began in the Cardiovascular Program at Boston Children’s, it is now being implemented throughout and beyond the hospital, and several SCAMPs have been launched in pediatric neurology/neurosurgery (see table). Through the nonprofitInstitute for Relevant Clinical Data Analytics, participating hospitals and provider groups can pool pertinent clinical data to further fuel improvement.
Both the shared care and SCAMP initiatives have a huge potential to reduce costs and improve patient outcomes by bringing in multiple perspectives. “Collaborative work enables conversations around shared accountability and really facilitates the ability to design and implement transformational models of care,” Antonelli says.
We offer several residency, internship and fellowship programs for practitioners seeking careers in the pediatric neuroscience community.
Neurosurgeon Benjamin Warf, MD (right), oversees a training program for pediatric neurosurgeons in Uganda.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”