By Melinda Young
EXECUTIVE SUMMARY
A project to improve care coordination for children with complex medical needs revealed well-trained nurse care coordinators could manage a 100-patient caseload and improve outcomes.
- Nurse care coordinators were embedded in primary care provider offices and were trained to provide care coordination, including helping patients with medical and social needs.
- Indiana Medicaid officials decided to expand the program over the next few years.
- Care coordinators meet with families when they see their primary care doctors and keep in touch through phone calls.
Care coordinators embedded in primary care practices have helped improve collaboration and management for a population of children with complex medical needs, including those with three or more subspecialists involved with their care.
These patients with cerebral palsy, spina bifida, Down syndrome, and other complex conditions are hospitalized frequently, often visit the ED, and attend many specialist appointments. Their families often face obstacles and challenges to navigating the healthcare system, new research shows.1
Recently, investigators published a paper showing providers can reliably identify medical complexity to determine which patients would benefit most from care coordination services.1 It is associated with the Indiana Complex Care Coordination Collaborative (IC4) and the Collaborative Improvement and Innovation Network to advance care for medically complex children.2
“The next step is to serve [more] patients,” says Mary R. Ciccarelli, MD, the Morris Green professor of pediatrics and a professor of clinical medicine at the Indiana University School of Medicine.
“We created a project to embed primary care nurses into primary care provider practices around the state and to coach them in care coordination skills,” Ciccarelli says. “We had rural and urban and academic sites, and also semi-urban and hospital-based.”
Each system hired a nurse and created a registry of their top 100 most complex patients. “We use a comprehensive intake, where nurses review the records and look at the person’s medical and social needs, and then create a roster of goals of unmet needs that we all want to address together as a collective team,” Ciccarelli explains. “That’s the process of care coordination: to identify, assess, and create target goals and work on them.”
Ciccarelli and colleagues found families were satisfied with the care coordination process. Indiana Medicaid decided to expand it from three practices to 24 over the next two years.
Ask the Right Questions
Training care coordinators, who are embedded with primary care providers (PCPs), to gather enough information during intakes was important. As the study evolved, training was tweaked and improved.
“The care coordinators were coming back to us, saying the families were having a hard time answering the questions because they had never been asked those kinds of questions before,” says Natasha Guffey, LSW, MSW, program director of IC4 in the department of pediatrics at the Riley Pediatric Care Center in Indianapolis.
For instance, care coordinators would ask about the child’s interests and strengths and who the child lives with. Families did not understand why care coordinators wanted to know these details. The coordinators needed training on how to explain why this information was important.
“We were developing training on how to ask these questions,” Guffey says. “Teaching care coordinators the ‘why’ behind the intake questions has helped them communicate that to the families and create a more robust plan of care.”
Nursing schools do not teach students how to be care coordinators for children with medical complexity, so their background experience in working with children and on-the-job training are important.
“I spent a lot of time as a school nurse, in home care, and working in the hospital with only pediatric patients,” says Lorena Flaa, BSN, RN, nursing care coordinator manager of IC4. “There is so much to know, and you don’t know what you don’t know. That’s why we wanted to develop this coaching program, which is what I do — training and working with coaches and working with new coordinators on how to get them the resources they need.”
Care coordinators learn more about their families through an eight-page shared plan of care and medical summary. The shared plan includes basic demographics, medical history, personal family information and history, resource/insurance information, education, and specific social details about patients. For example, it asks for a photo and for explanations of what the patient likes and his or her strengths. It also asks for the best way to connect with the patient and asks for their safety concerns and helpful tips for a good visit.
“Our shared plan of care is extensive in that it’s the cornerstone of everything we’re doing,” Flaa says. “It’s filled out with the medical record review, and it contains a health history of the child. It is all about the child and family, and it introduces the child to any provider who has not met them through a shared care network.”
Families answer questions about each child’s personal issues. For example, a child might be nervous around people with white coats. Care coordinators share this information with providers, suggesting they remove their lab coat around the child.
“The family is asked to share something about their child that other people may not know,” Flaa explains. “They could say, ‘Our child is so funny and loves to tell great jokes,’ so clinicians could ask them to tell them a joke.”
It also is helpful for care coordinators to meet with families during their visits with the child’s PCP. If there was a problem — such as a crying child — the family could inform the care coordinator why the child was behaving that way, such as a fear of needles.
“If the child is nonverbal, but can use hand gestures, we need that on the plan of care to share the information with the care coordinator,” Guffey says.
Playbooks Are a Useful Resource
Care coordinators and PCPs work together to determine the best next steps for care of the young patients. The model is based on addressing patients’ and families’ social determinants of health. Since the care coordinators are registered nurses, training included teaching them how to learn about their communities so they can find social resources.
Training also includes providing new coordinators with informational tools, called playbooks. These one- to three-page informational sheets explain how to navigate complicated systems, such as options for respite care in the state, Flaa says. The playbooks are specific to Indiana resources, but case managers and care coordinators in other states could create similar resources for themselves and for their patients. (For more information, see the story in this issue on creating care coordination playbooks.)
The playbooks, which number about 20, include electronic versions and are kept up to date as systems change and new information becomes available. Some provide detailed information on funding available to a child with a specific Medicaid or managed care plan. Care coordinators can use these to help patients find resources that are not traditionally provided by their healthcare organizations.
Be Creative and Flexible
The ideal nurse care coordinators are people who are self-directed, creative, and family-centered, Ciccarelli says. To identify the best candidates, they recommended checking references and using behavioral interviewing tactics.
“You use standardized questions to ask about their experiences that show how the person solves problems,” Ciccarelli explains. “Talking directly to candidates is critical.” For instance, an interviewer could ask how the candidate handled a big challenge in their work.
Creativity and flexibility are important because addressing social issues is beyond the scope of practice for many nurses. But hiring nurses instead of creating teams that included social workers was a practical solution to limited funding.
“If we had endless amounts of money, we’d include a social worker with this model,” Guffey notes. “That would be lovely but is not necessarily realistic.”
For example, they taught nurse care coordinators about Section 8 applications for housing, but they did not expect coordinators to help the family complete the application. The goal was for care coordinators to know how to contact social workers who labor in other settings and how to communicate about the patients’ barriers. They also needed to know who in the community could support the family with their challenges.
“We know that social workers are so important, and there are some things that have to be handled by a social worker,” Flaa says. “We want every care coordinator to have social work support, but we also want nurse care coordinators to have some basic knowledge of what’s available because their families work closely with them. We want them to be comfortable explaining the resource, but we don’t expect them to be experts or take the place of a social worker.”
Although the pilot project is ongoing, it is a positive sign that Medicaid believes it will work.
“The fact that Medicaid is willing to help us flesh this out to a model that can be disseminated across the state and country is exciting,” Guffey adds.
REFERENCES
- Burrell M, Ciccarelli M. Identifying children with medical complexity for care coordination in primary care settings. Clin Pediatr (Phila) 2022 Dec 29;99228221144803. doi: 10.1177/00099228221144803. [Online ahead of print].
- Indiana Complex Care Coordination Collaborative. Indiana University School of Medicine. 2023.
A project to improve care coordination for children with complex medical needs revealed well-trained nurse care coordinators could manage a 100-patient caseload and improve outcomes. Nurse care coordinators were embedded in primary care provider offices and were trained to provide care coordination, including helping patients with medical and social needs.
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