Transforming patient care through multidisciplinary treatment
With one of the largest full-service endocrinology programs in the country, Children’s Mercy offers a multidisciplinary, comprehensive approach to treating children with endocrine and metabolic disorders.
Collectively, 21 pediatric endocrinologists and nearly 100 other professionals reach across subspecialties to provide immediate care, while conducting cutting-edge research that is leading to innovative treatment options.
"We’ve developed a number of focus clinics at Children’s Mercy over the past several years to provide a medical home for patients with rare and unique conditions,” said Wayne V. Moore, MD, PhD, CPI, Endocrinology Division Chief and Professor of Pediatrics, University of Missouri-Kansas City School of Medicine. “As a result of our work, we’ve confirmed that several of these conditions benefit from coordination of multiple specialties to provide proper treatment and management."
Unique conditions addressed by multidisciplinary focus clinics at Children’s Mercy include 22Q Deletion Syndrome, Turner Syndrome, Noonan Syndrome, thyroid nodules, endocrine-related calcium metabolism, endocrine disorders in cancer survivors, and sexual differentiation.
Super Q Express – 22Q Clinic
Children with 22q11.2 Deletion Syndrome have an arduous run through the health care system. The Super Q Express-22Q Clinic, which began in June 2013, was designed to provide ongoing support, medical care and information to these patients and their families. Our clinic brings together doctors, nurses, social workers and coordinators to care for patients using a team approach.
"The treatment of these kids is extremely complicated because there is no body system that can’t be impacted," said Max Feldt, DO, Director of the Endocrine Outreach Program at Children’s Mercy and Director of the Super Q Express Clinic. "They are deeply enmeshed in the medical system - seeing everyone from endocrinologists, ENTs, cardiologists and gastroenterologists. However, it is hard for families to navigate the system without a common, central resource."
The Super Q Express Clinic provides treatment for five to six children during a half day each month on the Children’s Mercy campus. Since there are few clinics offering these coordinated services, families travel from as far away as 400 miles. Due to the high level of participation in the clinic, there are plans under way to add at least one additional half day a month to the schedule.
In addition to providing coordinated care, patients receive appropriate yearly screening in accordance with published guidelines. Dr. Feldt hopes centralizing treatment also will improve patient compliance with care plans. One early catalyst for Dr. Feldt was the realization that there was a high rate of missed appointments among his patients with 22q11DS deletion.
Great HeighTS Turner Syndrome Clinic
Launched in 2011, the unique Turner Syndrome Clinic partners with specialists in cardiology, nephrology, developmental medicine, adolescent medicine, pediatric gynecology, orthopedic surgery, genetics, hearing and speech and others, to provide patients a one-stop shop for treatment. Held every four months, patients attending the one-day clinic can see multiple specialists in one, convenient location. The schedule minimizes the number of medical visits families need to make, alleviating missed school and work.
"It was all designed with the patient in mind," said Joseph Cernich, MD, Medical Director of the Great Heights Turner Syndrome Clinic and Assistant Professor of Pediatrics, University of Missouri-Kansas City School of Medicine. Social activities are a big part of the clinic, including art projects and a hair and nail session for the girls, and educational opportunities for parents. Lunch-and-Learn sessions focus on topics of interest to families such as medical complications associated with Turner Syndrome.
"We provide opportunity for interaction so the girls can have a good time and meet others who are going through the same situations they are,” Dr. Cernich said. "It’s much the same for parents. They can network and talk about family issues, such as a child having difficulties in school. Together, they learn they are not alone in their challenges, and discover how others are handling problems associated with Turner Syndrome.”
Thyroid Nodule and Carcinoma Clinic
While thyroid nodules in children are not uncommon, the hospital's Thyroid Nodule and Carcinoma Clinic at Children’s Mercy is uncommon. It is the region’s only pediatric-based clinic serving as the intake for thyroid nodules and goiters that are not clearly autoimmune thyroid disease. It is also one of only a handful of national thyroid clinics that offers a comprehensive, multidisciplinary approach bringing together experts in endocrinology, radiology, pathology and surgery.
Together, they diagnose patients, then determine the long-term management of thyroid nodules and differentiated carcinoma.
The clinic opened in 2011 and is held once a month to provide an efficient way for patients to see multiple specialists. Initial evaluations typically involve a thyroid ultrasound and thyroid function test. If needed, a fine needle aspiration is conducted to determine if additional treatment or surgery is required. All evaluations follow published guidelines.
"Treatment methods have changed, so we follow these guidelines to ensure a coordinated and integrated effort across our specialties," said Naim G. Mitre, MD, Medical Director of the clinic and Assistant Professor of Pediatrics, University of Missouri-Kansas City School of Medicine. “It allows us to perform more directed surgery with less reliance on radioactive iodine. Working together, we ensure that each patient receives the best care possible.”
Disorders of Sexual Development
At the GUIDE Clinic (Gynecology/Genetics, Urology, Integrated, Developmental and Endocrine), a multispecialty team cares for infants, children, adolescents and young adults with disorders of sexual differentiation (DSD). Working together, endocrinologists, geneticists, psychologists, social workers, and urologists offer personalized care to treat a range of conditions commonly associated with DSD.
Conditions treated at the GUIDE Clinic include:
- Congenital adrenal hyperplasia (CAH)
- Mixed gonadal dysgenesis (MGD)
- Vaginal agenesis/Mayer-von-Rokitansky-Kuster-
- Hauser’s syndrome (MRKH)
- Cloacal anomalies
- Ovotesticular DSD
Team members are sensitive to the psychological issues family members may struggle with as a result of the various conditions. Appointments with multiple specialists are scheduled during visits to the GUIDE Clinic to eliminate the need for multiple visits. Lab work also is completed if needed.
Using Genomic Analysis
TaGSCAN (Targeted Gene Sequencing and Custom Analysis) developed by Children’s Mercy Center for Pediatric Genomic Medicine, is helping the GUIDE team increase diagnoses, as is targeted gene sequencing. The discoveries guide treatment and provide relief to family members.
"Some of these conditions have associated problems, so we need to know what is going on to predict what is in store for these patients in the future. Knowing that, we can have appropriate specialists and treatments standing by,” said Jill Jacobson, MD, CPI Director of GUIDE Clinic and Professor of Pediatrics/ Endocrinology, University of Missouri-Kansas City School of Medicine.
While maintaining the same emphasis on coordinated care across disciplines, additional clinical programs at Children’s Mercy focus on growth hormone and diabetes. Translational and collaborative clinical research in prevention of both diabetes and its chronic complications will help develop new approaches and treatments for the future.
Children’s Mercy Endocrinology Focus Clinics Our focus clinics provide highly specialized, multidisciplinary care to meet the unique needs of patients with endocrine-related disorders. Other focus clinics include:
Cystic Fibrosis/Endocrine Clinic
The Cystic Fibrosis/Endocrine Clinic takes a comprehensive, multidisciplinary approach to endocrine-related disorders associated with cystic fibrosis. This includes children with cystic fibrosis who may have abnormal blood sugar, growth failure or delay in puberty.
Endocrine Disorders in Cancer Survivors Clinic
The Endocrine Disorders in Cancer Survivors Clinic, along with the Survive and Thrive Clinic, provide multidisciplinary medical care for children facing these unique challenges.