08
June
2020
|
08:50 PM
Europe/Amsterdam

Neurology and Rheumatology Combine to Offer Unified Care Plans

Creative Collaboration Improves Care for Rare Diseases

Summary

In 2012, a patient presented at Children’s Mercy Kansas City with CNS sarcoidosis, a rare autoimmune disease seen primarily in adults. Her rheumatologist noted changes in the patient’s spinal cord, so she contacted one of the neurologists at Children’s Mercy. Together they met with the patient and devised a care plan that covered both the rheumatological and neurological aspects of the disease. This close collaboration created the genesis of the Neurology-Rheumatology Combined Clinic at Children’s Mercy, which has since expanded to having 84 patient visits per year in a clinic that meets monthly.

Improving Care Through Real-Time Collaboration 

The Neurology-Rheumatology Combined Clinic now includes three physicians: Tyler Allison, MD, neurologist; Cara Hoffart, DO, rheumatologist; and Julia Harris, MD, rheumatologist. Together they see a highly complex patient population with autoimmune conditions that affect the central nervous system (neuroimmune disease). With these rare pediatric diseases, the team is faced with a lack of data and trials to guide treatment plans. They often must extrapolate information from the adult literature and case reports and series. The team members combine their knowledge and provide care based on the most current evidence-based guidelines from each subspecialty.

On clinic days, patients are seen concurrently by a neurologist and rheumatologist. Each performs a thorough physical exam, and together they listen to input from the patient. By the end of the visit, the team creates a unified plan of care. The parents and patients appreciate the combined visits, which minimize time and transport for the families. More importantly, the patients feel confident in the plan of care, having heard it from both the neurologist and rheumatologist at the same time. They also better understand the treatment rationale and are more engaged in the management of their own illnesses.

Some conditions treated in the clinic: 

  • Adenosine deaminase 2 (ADA2) deficiency
  • Autoimmune ataxia
  • Autoimmune encephalopathies/encephalitides; including anti-NMDA receptor encephalitis
  • Chronic inflammatory demyelinating polyneuropathy (CIDP)
  • CNS lupus
  • CNS sarcoidosis
  • CNS vasculitis
  • MOG-IgG-associated inflammatory disease
  • Myasthenia gravis
  • Neuromyelitis optica ± spectrum disorder
  • Opsoclonus-myoclonus syndrome

Pooling Data on Rare Conditions Via Brainworks

BrainWorks, an international repository created at The Hospital for Sick Children, was established to improve the understanding of inflammatory diseases of the brain and spinal cord. This multisite consortium of neuroimmunology patients provides an avenue for pediatric centers to pool data on rare diseases as a way to develop the most effective diagnostic and treatment approaches using evidence-based medicine.

Dr. Allison is the site principal investigator for BrainWorks for Children’s Mercy. The team is a significant contributor to the registry due to the large volume of patients who meet criteria for inclusion in the database. The data they contribute will eventually help foster research that will lead to new guidelines and protocols for diagnosing and treating pediatric patients instead of extrapolating from adult patient data and case reports.

Increasing Clinic Capacity and Capabilities 

For the first four years, clinic capacity was 24 visits per year. Today the clinic handles approximately 84 patient visits per year. Due to increased demand, plans are in place to expand appointment availability to be able to handle more than 120 patient visits per year. The team is also making plans to expand capabilities. For example, approximately 80% of clinic patients are living with a chronic illness, which can be difficult to process. Psychologists will soon be integrated into the clinic to provide mental health support, and discussions are underway to determine ways to provide strong psychosocial support to families.

Patient Story

When an 8-year old child presented to Children’s Mercy for a stroke, the care team was focused on identifying the underlying cause. The patient recovered well from the first stroke in a short period of time, but even after a significant work-up, the team was unable to find the underlying reason. A month later, the patient had a second stroke, which led to a brain biopsy diagnosis of primary CNS vasculitis. Dr. Harris and Dr. Allison worked together in the Neurology-Rheumatology Clinic to provide the patient with the best evidence-based treatments available, based on BrainWorks protocols. After several months of treatment, the patient relapsed, suffering a third stroke. While scant medical evidence existed to specify the next step in therapy the team’s ongoing collaboration in the Neurology-Rheumatology Clinic led to treatment options that have managed this rare disease for the past two to three years without any signs of relapse.

Learn More About the Neurology-Rheumatology Combined Clinic at Children's Mercy

Tyler Allison, MD

Director, Neurology-Rheumatology Clinic 

tallison@cmh.edu / (816) 302-3331

 

Julia Harris, MD

jgharris@cmh.edu / (816) 302-3686

 

 

Cara Hoffart, DO

cmhoffart@cmh.edu / (816) 302-3686

 

About Us

Children’s Mercy Kansas City is ranked as one of “America's Best Children's Hospitals” in all 10 specialties rated by U.S. News & World Report and has received MagnetTM recognition for excellence in nursing services four consecutive times. With 366 licensed beds and a medical staff of more than 750 pediatric subspecialists, we care for children from all 50 states and from around the world. In addition, our leadership in pediatric genomic medicine and individualized pediatric therapeutics is driving research and innovation in neonatology, nephrology, endocrinology, gastroenterology, neurology, heart, cancer and other subspecialties to transform outcomes for children. Children’s Mercy also is nationally recognized for innovation in psychosocial care and creating a family-centered environment focused on the unique needs of hospitalized children and their families. Our love for children powers everything we do, inspiring our research, innovations and our everyday care. Because love has no limits. And with it, neither do we.