The innovation: Helping spina bifida patients transition to adult care – and gain independence

Most children who have spina bifida require lifelong care for chronic urological issues. As they grow into young adults, they often face challenges in finding specialized adult care for their unique health needs.

The Children’s Health ℠ urology team created one of the nation’s first transitional spina bifida programs to care for these patients until age 26, and the team connects patients with providers who specialize in helping adults with spina bifida stay healthy and independent.

This program has spearheaded many innovative approaches – including a series of assessments on self-management and sexual health – that have improved care for this population. These assessments guide individualized treatment planning, overall program development and illustrate the team’s commitment to ensuring that these patients get the best possible care.

The big picture: Specialized services and support for young adults with spina bifida

As young adults, patients with spina bifida have health needs ranging from urological issues, such as neurogenic bladder, incontinence or infection, to sexual health concerns, such as sensation and function. Or they may need follow-up care for previous or ongoing reconstructive urology procedures, such as augmentation cystoplasty, ureteral reimplantation or pelvic floor reconstruction. To address these unique needs, the Transitional Spina Bifida Program provides medical and surgical urological care, patient education and social work for patients from ages 18 through 26. The program launched in 2014 and the team has been dedicated to improving care for this patient population ever since.

The program’s co-directors are Micah Jacobs, M.D., and Bruce Schlomer, M.D., both Pediatric Urologists and Associate Professors at UT Southwestern.

Dr. Jacobs notes that, in particular, spina bifida patients who have neurogenic bladder need lifelong care to preserve renal function. Because much of the care they need is surgical, that care comes from an adult urologist. Without ongoing urological care, adult spina bifida patients are at a higher risk of needing urgent care and experiencing acute issues, such as renal failure, sepsis or even death.

“Before we created the Transitional Spina Bifida Program, many patients would either not get specialized care once they turned 18 or stop getting care altogether, which can lead to serious morbidity,” Dr. Jacobs notes. “It's really gratifying to know that we're filling this critical care gap and helping them find adult providers.”

Key details: Tailoring subspecialty care by adding vital disciplines

By the time children with spina bifida reach adulthood, many of their neurological, orthopedic and other symptoms have been addressed. Urologists lead this transitional program to focus on these patients’ most pressing need: urological care. The program and its services are designed for patients who:

• Have active urological issues that need medical or surgical care
• Have the potential to live independently and don’t need ongoing or frequent inpatient care

The Children’s Health program has added other key roles – a social worker and a rehab doctor – to support patients’ logistical and physical function needs. The team includes:

• Pediatric urologists Dr. Jacobs and Dr. Schlomer
• Janelle Traylor, R.N., M.S.N, F.N.P., a urology-specialized nurse practitioner who manages the clinic
• Rebecca Neville, a dedicated social worker who helps patients navigate the health care system and manage other needs
• Clarice Sinn, D.O., a physical medicine and rehabilitation doctor for physical exams, rehabilitation and Botox injections to treat contractures

“Over time, we’ve found that our patients really need help with all the things they need to do for success as adults,” Dr. Jacobs says. “That’s why we added a social worker to help them overcome barriers to managing finances, health insurance coverage, medications, medical equipment and other self-care issues.”

Patients typically come to the clinic once a year for ultrasounds and blood work. If needed, they  can come more often for additional services, including social work and counseling for sexual health issues and help with questions about sexual activity, pregnancy preparation, erectile dysfunction and related issues. We offer a male and a female provider to make sure patients are comfortable.

Practice-changing assessment tools

The team customizes care based on each person’s medical stability and their level of self-care and independence. To personalize each patient’s treatment plan, the team uses several questionnaires, including:

• Transition Readiness Assessment Questionnaire (TRAQ): This validated questionnaire helps patients assess their current self-management skills to determine areas they can work on.
• International Index of Erectile Function (IIEF), also called the Sexual Health Inventory for Men score: This standard urology/erectile function questionnaire, also validated, evaluates male sexual function.
• General sexual health questionnaire: The team developed this tool de novo to assess a wide range of sexual health issues such as sexual activity, sensation, masturbation and other issues.

“The questionnaire assessment tools open the door for conversation for the patients, and they help me see how I can better tailor their care,” Ms. Traylor says. “They also let me know where a patient’s needs are and if we need Rebecca [the social worker] or Dr. Sinn more involved in their care.”

Why Children’s Health: Next steps in advancing care for young adult spina bifida patients

A key challenge for pediatric spina bifida patients is finding adult providers with experience in lifelong spina bifida management. The Children’s Health team is working to improve how they connect patients with adult care as they age out of the transitional program. Some of the strategies they’re developing include:

• Streamlining referrals with our partner clinic so patients can seamlessly transfer their care
• Creating a database of adult urologists in the Dallas-Fort Worth area along with the health insurance plans that they accept, to help match patients with potential providers
• Coordinating care with adult primary care providers for patients who haven’t already established such care

As we continue to provide nation-leading care for this patient population, one major goal is to develop relationships with adult urologists who have an interest in the reconstructive surgery patient population.

“We’re looking for adult urology providers, particularly those involved in urinary tract, pelvic floor and male reconstruction, who specialize in taking care of patients who have complex urological histories,” Dr. Jacobs says. “By connecting patients with those providers, we can help ensure that they get all the care they need to live the healthiest possible lives.”

Learn more about innovative pediatric urology care at Children’s Health >>