Multidisciplinary Clinic Addresses Unique Needs of Adult Myelomeningocele Patients

By Hadley Wood, MD

Myelomeningocele, also known as spina bifida, is the most common permanent congenital anomaly in the United States. Many adults with this condition feel marginalized by the mainstream healthcare system.

During the past 30 years, the institution of multidisciplinary clinics for children with myelomeningocele has become the standard of care. These clinics integrate neurological, urological and orthopaedic care and social services for patients and families living with this condition.

Extended life spans, distinct problems

The improvement in care for children affected by myelomeningocele has resulted in prolonged life spans and better quality of life, with more than 85 percent of these children now surviving into adulthood.

Increasing awareness of the disparity of care for this population in adulthood, as well as an understanding that adults with myelomeningocele experience deterioration of function and problems distinct from those encountered in childhood, present a unique opportunity for innovative care models for this population.

Recapturing adult patients

In 2014, Cleveland Clinic initiated a multidisciplinary clinic for adults with myelomeningocele. The goals of this effort are threefold:

• To provide ongoing support for patients who have “outgrown” the pediatric myelomeningocele clinic
• To “recapture” and provide ongoing preventive medical care to adult patients who have been lost to routine medical care
• To better understand the unique medical needs and quality of life concerns of these patients as they age

Streamlining care

The clinic is staffed by physicians and allied healthcare provider representatives from urology, physical medicine and internal medicine. For patients’ convenience, their records are reviewed prior to the clinic so that appropriate screening testing can be ordered on the same day as the appointment.

As needed, referrals to providers in gastroenterology, gynecology, plastic surgery, neurosurgery and other specialties are facilitated.

The effort is labor-intensive, and reimbursement for medical services is poor. In this setting, back-office organization of patient scheduling, test scheduling and pre-visit phone calls is critical. Clinics are offered every four months. In the clinic, maintenance of a critical mass of patients supports intensive staffing and allows for streamlined processes that address orthotics and wheelchair/equipment needs, as well as medical concerns.

Dr. Wood is a staff physician in Cleveland Clinic’s Department of Urology.