Changing the Standard of Care for Pediatric BBD Patients

Pediatric bowel and bladder dysfunction (BBD) is a functional disorder that negatively impacts a patient’s physical and psycho-social health – causing stress and anxiety for these children and their families while representing a significant burden on the healthcare system, primary care, and pediatric urology clinics.

To improve the quality of life for young BBD patients, and help alleviate these institutional burdens, Jennika Finup, NP, of the Division of Pediatric Urology, is both researching and leading the implementation of more effective approaches for treating children with BBD.

Finup states that when she first joined UW’s Pediatric Urology team in 2018, BBD patient referrals were “challenging visits.” Patients and their families were frequently unhappy due to the long wait to see a pediatric urology provider or have testing done – and then testing would find nothing useful.  “I just felt frustrated with the way we were seeing and treating these children.”

Approximately 40% of visits to UW Pediatric Urology clinics are with BBD patients – and Finup says that this doesn’t have to be the case, explaining that because BBD does not have an underlying structural cause and does not require surgery, the foundational treatment for the condition is “education and behavioral modification.” And this form of treatment, according to Finup, “can be done at the primary care level.” Unfortunately – due to a lack of research and education – this first-line approach often doesn’t happen in the primary care setting; typically, these patients receive a referral to pediatric urologic care, resulting in a significant delay until symptom improvement.

Faced with this less-than-ideal situation for her patients, Finup set out to “redesign the way that we see and treat these kids.” As a framework, she sought answers to these questions:

How can we change the way we see these kids?
How can we do less imaging that’s unnecessary and less lab work than we need to do?
And what other kind of multidisciplinary care do these kids need?

Finup’s first step was to develop a preclinic nurse telemedicine visit to educate families immediately upon referral – her team could start the behavioral interventions weeks before patients ever met their pediatric urology provider. After implementing this new approach, Finup found that many of these children were coming in with their symptoms already improved or resolved – increasing satisfaction among patients, their families, and providers while decreasing the burden on pediatric urology clinics. Finup says this happened because, by the time patients arrived for that first appointment, they had already implemented behavioral strategies, completed forms and voiding diaries, and got “a much better overview on that first visit.”

Next, Finup noticed that many BBD patients coming into her clinic had underlying issues like ADHD, anxiety, and depression or were children on the autism spectrum. To determine how those conditions might correlate to BBD symptoms, Finup began screening BBD patients for neuropsychiatric disorders – and what she found was striking.

The children with the worst-presenting initial symptoms also had the highest likelihood of having an underlying neuropsychiatric disorder.

This finding is important, says Finup, as it helps shine a light on the fact that “this isn’t just a ‘peeing problem,’ it’s not something you can just send to urology, and we can always fix . . . there is more going on for a lot of these kids.” Finup stresses that the screening questionnaire she uses has “very good sensitivity, but moderate specificity” and is only intended as a screening tool, not a means of diagnosing kids with a neuropsychiatric disorder. Thus, her next step is connecting those undiagnosed patients who screen positive for a neuropsychiatric disorder with a behavioral health specialist to get a diagnosis, strengthen her research, and ultimately help improve the standard of care for children with BBD.

In addition to her research, Finup has begun building a statewide BBD network that will connect primary care providers with additional training in BBD and the tools to self-manage BBD patients within their clinics before referring them to pediatric urology care. Many pediatricians send patients to the urology clinic because they believe these children need imaging or other testing, but Finup states that research by her and her team examining the use of ultrasound in these cases showed that most pediatric BBD patients do not need that kind of imaging. Roughly 72% of patients only needed the behavioral modifications, “they didn’t need medications, they didn’t need pelvic floor therapy or any additional testing.” These are things that often carry with them additional costs for patient families.

Finup’s hope is that by doing these research studies and reassuring pediatricians that they’re not going to be missing something, these providers will be able to educate patients and their families and implement these behavioral strategies in their clinic – and most importantly, children with BBD will receive the care they need.