Complex Care Center remaking treatment for adults with childhood diseases

Children with complex, lifelong medical conditions face many challenges; one of the biggest happens when they turn 18 and have to make the transition from pediatric to adult primary care. A new UR Medicine primary care practice opened in March 2016 and it’s a welcoming, warm and comfortable “medical home” for these patients and their families. 

 

The Center is Rochester’s first primary care practice dedicated to caring for adults with chronic childhood-onset conditions such as cystic fibrosis, sickle cell anemia, childhood cancers, autism, and intellectual and developmental disabilities. 

 

A primary care practice devoted to adults with childhood diseases is not only new in Rochester: across the nation, only a few such centers exist, but demand for this type of care is rising as the patient population grows. Thanks to medical advances, more than 90 percent of children with special health care needs now reach adulthood, and for some conditions, adult patients outnumber children.

 

“As the leader in complex pediatric care for the region, families rely on the Golisano Children’s Hospital when their children need advanced medical care, and they also turn to our system for help as their children become adults,” said Mark Taubman, M.D., CEO of the University of Rochester Medical Center and Dean of the University of Rochester School of Medicine and Dentistry. “Our new Complex Care Center marks a significant commitment by UR Medicine to improve health transitions and address the special needs of these patients throughout their lives.”   

 

The Center offers specialized outpatient services to better meet the needs of patients who often have multiple, severe conditions that require close management, and who face disparities in accessing health care. Patients who graduate from pediatric focused care often have a combination of challenges moving to an adult primary care setting. They may have difficulty finding a provider, and lack of reliable access to outpatient care often results in preventable Emergency Department visits and hospital stays. 

 

“We developed the Complex Care Center model over the past several years by really listening to our patients and families,” said Tiffany Pulcino, M.D., M.P.H., the Center’s director. “We know the challenges they face, and our entire team is passionate about making health care better for them. We want to provide them a medical ‘home’ in the truest sense of the word – a place where they can come and feel welcome, cared for, and supported.”  

 

The Complex Care Center adds to the array of programs and services UR Medicine provides patients with intellectual and developmental disabilities (IDD). Margy Mattison, mother of two sons with MECP2 Duplication Syndrome, a rare neurodevelopmental disorder, will rely on the Center to help manage care for Tyler, 21, and Josh, 19. She credits Pulcino for helping her and her family transition from pediatric primary care to the adult setting – which has been especially challenging during her sons’ frequent hospitalizations. 

 

“I feel truly blessed to have a doctor, a go-to person, who understands their needs; it is huge to have someone on our side,” Mattison said. 

 

The 2500-square-foot Complex Care Center is designed as a primary care practice, but with key differences tailored to its patient population. Providers and care managers will have fewer patients than in a traditional primary care practice, allowing adequate time to work with patients and develop care plans. The care team is geared to helping patients navigate the health care system to reduce preventable ED visits and hospitalizations. An Inpatient Consult Provider will divide clinical time between the Complex Care Center and UR Medicine-affiliated hospitals to collaborate with hospital providers on inpatient care, and facilitate a smooth transition from hospital to home when a patient is discharged. 

 

In addition to primary care, the new practice will offer other essential services, including nutritional counseling, respiratory therapy, behavioral health, and a lab draw station, with plans to add physical and occupational therapy in coming months.  

 

Access to oral health care is a significant unmet need – particularly for patients with intellectual and developmental disabilities – in large part because there are not enough dentists trained to care for them. The Eastman Institute for Oral Health (EIOH) will have oral health services integrated into the Complex Care Center.  The entire clinical space, including the dentistry rooms, are equipped with adaptive devices to provide dental care to both adult and pediatric patients. The Complex Care Center dental and medical directors are working collaboratively to develop a dental residency training program at the center, ensuring future generations of oral health specialists gain experience in treating complex patients. EIOH residency training is made possible through a Health Resources and Services Administration grant. 

 

The Center’s concentration of patients with childhood-onset conditions makes it an ideal setting for research on the impact of these conditions on adults and how to optimize their health and functional status. Research scientists from the UR Ernest J. Del Monte Institute for Neuromedicine will have space onsite and seek input from the Center’s caregivers as they work to discover more effective therapies and interventions. 

 

“The key to cutting-edge health delivery is a deep understanding of patients’ underlying issues and our researchers will benefit from close collaboration with providers and their patients at the Complex Care Center,” said John J. Foxe, Ph.D., Director of the Del Monte Neuromedicine Institute.  “Research and clinical delivery go hand-in-hand – that’s how you get to better treatments and therapies.” Through the research enterprise, patients at the Center will have access to advanced diagnostic testing and emerging treatments in clinical trials.

 

The Complex Care Center team will also explore new approaches to caring for patients with complex needs. Only a generation ago, patients with conditions like sickle cell disease or cystic fibrosis did not survive to adulthood, so medical providers haven’t formed consensus on the best approaches to care for adult patients. Resources for providers and patients are in short supply. The center aims to be a resource for primary care providers in Rochester and the region who also see patients with complex conditions by offering them information and support – including phone consultations, educational sessions, and patient care protocols designed for them.   A Greater Rochester Health Foundation grant supports the Center’s workforce development initiatives. 

 

Several local and national organizations have been instrumental in the center’s launch, including the Farash Foundation, which donated the building that houses the Complex Care Center to UR Medicine; the national Cystic Fibrosis Foundation, which provides grant funding for UR Medicine’s Cystic Fibrosis Center; and the Lobozzo-Walsh Family Foundation, which donated funding.