Transforming care: how one clinician changed the lives of children with bladder and bowel dysfunction

Bladder and bowel dysfunction (BBD) in children is a significant yet often underdiagnosed issue in Canada. BBD encompasses a range of lower urinary tract symptoms and fecal elimination issues, meaning children have little or no control over their bladder and bowel movements. In pediatric urology clinics, BBD is one of the most common reasons for referral, accounting for up to 40% of consultations. Many of these cases are treatable, but around 1% do not respond to any treatment and are considered refractory. This can lead to a substantial physical and psychosocial burden for affected children and their families. 

Dr. Joana Dos Santos, a Medical Urologist at The Hospital for Sick Children (SickKids) and Assistant Professor of Paediatrics, University of Toronto, has focused her research and clinical practice on BBD. When she joined the faculty in 2015, her goal was to offer alternative therapies for children with refractory BBD, including a treatment known as sacral neurostimulation (SNS). At the time, SNS devices were not approved by Health Canada for use in children. However, SNS had already been successfully used in other countries, with strong evidence supporting its efficacy and positive impact on the quality of life for pediatric patients.

Dr. Dos Santos implemented SNS at SickKids with the support of her Master's in Translational Research (The TRP Program). She also worked closely with the hospital to secure provincial funding for the therapy. In 2017, the Pediatric Sacral Neurostimulation Program was launched at SickKids - Canada's first program of its kind for children. 

SNS involves implanting a small device that delivers electrical impulses and stimulates the nerves at the base of the spine (sacral nerves). It helps to improve control over bladder and bowel functions by modulating the neural pathways involved in these processes; essentially acting as a "pacemaker" for the bladder and bowels. 

“SNS has already been used in many other countries with great results for children who do not respond to any treatments for urinary and fecal incontinence. We couldn’t bring this technology to our Canadian patients despite being very well established for more than 15 years elsewhere, due to the lack of approval from regulatory bodies. There was a lot of data on adults and some for children which looked very promising, so I wanted to change the situation here and help my patients.”

To help her achieve her goals, she enrolled in the Translational Research Program (TRP) in the Temerty Faculty of Medicine, a two-year master’s program that teaches participants how to innovate in the challenging healthcare space.

Having pitched her case to SickKids, who gave her some protected time and funding to complete her masters, she made the pediatric access to SNS therapy her TRP Capstone research project which she worked on with her project team - fellow students Dr. Edyta Marcon, now the TRP Program Director, and Dr. Reza Vali, Staff Radiologist at SickKids. “My instructors, mentors and everyone else I worked with at the TRP took on the challenge with me. We spoke to many people: Health Canada, the SNS manufacturer, adult urologists. As junior staff, the networking I was able to do, with the backing of the TRP and U of T, really enhanced my career. Through everyone’s guidance and support, I wrote a proposal for the Ministry of Health as part of my Capstone. By the time I was giving my final project defence, my first patient was being fitted with the device.”

Having learned how to truly assess patient needs, talking to the right stakeholders in a diplomatic way, and knowing how to navigate the system, all with university support, enabled Dos Santos to think outside the box and introduce real change. The first part of her project was to do a needs assessment study. Supported by this data, Dr. Dos Santos conducted a pilot study with five patients and this evidence helped secure the support from the Ministry of Health.  

Once approved, the patients at SickKids were the first in Canada to be treated with sacral stimulators. The current cohort of 10 patients, ranging in age from 8 to 18, have been responding to the treatment with a high success rate and the team recently published a study on some of the cohort in the Canadian Urological Association Journal. 

“The impact on quality of life for these kids is huge. They avoid more invasive therapies and procedures, gain more confidence and most importantly, gain some freedom – for instance, to go to school, play sports, and go for sleepovers or camps – all without worrying about urine or fecal leaking, something that would have been impossible for them before this treatment or more invasive therapies. It’s incredibly rewarding to see.”

For Dos Santos, the skills, knowledge and confidence she gained from the TRP has transformed her practice. “As a clinician-scientist, writing manuscripts and doing research is great, but there is no more palpable way than true translation. To get that knowledge to directly make an impact on the patients is what I want to do, and I could not have done that without the TRP and the support of SickKids.”

Related papers 

• Sacral neuromodulation in pediatric refractory bladder and bowel dysfunction Insights from Canada's first pediatric cohort (2024) 
• Bladder and bowel dysfunction in children: An update on the diagnosis and treatment of a common, but underdiagnosed pediatric problem (2017)
• Neurostimulation Therapy for Pediatric Primary Enuresis: A Meta-analysis (2017)