Urinary problems like frequent urination and urinary leakage can severely limit the quality of life in adults with Cerebral Palsy (CP). These bladder problems are also common in other nervous system diseases such as spinal cord injury and spina bifida; we call this condition “neurogenic bladder”. Our prior research and clinical experience suggests that neurogenic bladder may not be the most precise term for people with CP. CP differs from the other conditions in that muscle spasticity, communication challenges, and behavioral changes associated with the disease may play just as much a role in bladder function and management as the nervous system damage. Therefore, it would be premature and may be inaccurate to use a neurogenic bladder questionnaires designed for spinal cord injured individuals or individuals living with multiple sclerosis to measure bladder function in CP.
Drs. Sean Elliott and Blayne Welk, both members of the Neurogenic Bladder Research Group (NBRG), have received research funding through a generous grant from the Pedal with Pete foundation, an organization dedicated to advancing research in CP. The organization was founded with the goals of preventing, treating and hopefully curing CP. Pedal with Pete’s founder has always been determined to demonstrate that a handicap doesn’t have to equate to a limitation. Under his leadership, this foundation has raised over $800,000 for CP research and is well on its way to the goal of $1,000,000.
This study was funded by a large grant from PCORI in 2015. It collected detailed demographics, and numerous validated QOL questionnaires from almost 1500 people in North America who were living with SCI. This project was made possible by leveraging the large SCI patient populations of three primary centers (University of Utah, Minnesota, and Michigan). In the seminal paper from this study, people with SCI who underwent an operative urinary diversion or reconstruction had significantly fewer bladder symptoms (primarily due to reduced incontinence) and an improved bladder management QOL compared to those who were using intermittent catheters (IC) through their native urethra.1 This finding helps to validate the operative complications that patients take on when they select reconstruction or diversion, and was one of the primary hypotheses evaluated with this project.
The dataset from this study became known as the NBRG SCI registry, and it was used to study several research questions relevant to SCI. Maintaining people on IC after SCI is a common goal of urologists, however, we know that people tend to switch to other types of bladder management over time. Of the 176 patients in the registry who had used but discontinued IC, the common reasons can be nicely summarised as the four “I’s”: inconvenience, incontinence, infections, and independence.2 This reinforces to physicians the importance of actively managing factors we can influence, such as urinary infections and incontinence, in people using IC after SCI in order to maximise bladder management satisfaction. When looking at what predicts dissatisfaction with IC, female gender, frequent infections, and bowel dysfunction were significantly corelated with dissatisfaction, however importantly level of injury, fine motor hand function, and caregiver dependence for IC did not.3 It is important to note that this is within a self-selected population that had chosen IC, and in most cases had persisted with it for several years after their SCI. The NBRG SCI registry data also demonstrated that fine motor skill has the greatest association with IC as the primary bladder management after a median of 11 years from SCI.4 Another study showed that after SCI, people with public insurance status were less likely to use IC, and less likely to take bladder medication, however despite this, QOL and bladder symptoms were similar between those with public or private healthcare.5
Urinary tract infections are major source of morbidity for people after SCI, and a frustrating problem for urologists to manage. While culture proven symptomatic infections are the standard definition that we try to promote, in practise many patients are bothered by symptoms suggestive of a low-grade urinary infection and this is difficult to differentiate from asymptomatic bacteriuria. Patients often still consider this a “UTI” and in most cases receive treatment for it. In the NBRG SCI registry, self-reported urinary infections were highest among people who use indwelling catheters;6 it is however surprising that the magnitude of risk of these self-reported UTIs (with SCI patients who void as the reference category) is not all that different between IC users (OR 3.42, 95% CI 2.25–5.18) compared to indwelling catheter users (OR 4.3, 95% CI 2.59–6.70). In addition to the medical risks of urinary infections, they are an independent, and “dose dependent” risk factor that has a negative impact on a person’s QOL.7 Among the 1260 patients in the registry who had 1 year followup, there was a 14% rate of urologic hospitalisation, and of these, 88% were due to urinary infections.8 UTIs are an obvious problem in this patient population, and this research underscores the importance of addressing the this problem in future studies.
The NBRG SCI registry provided a contemporary, detailed evaluation of a large group of people living with SCI. Strengths of the data included geographic diversity, a large number of patients, detailed patient characteristics and validated outcome measures for people with SCI (a common limitation of previous studies). This registry was the required motivation to formalise and grow the NBRG into a research collaborative which is committed to pursuing collaborative, meaningful research questions in neurourology.
Principle investigator: B Welk (Western University)
Co Investigators: J Myers (University of Utah), M Kennelly (University of North Carolina)
Funded for $199,000 by the Craig H Neilsen Foundation
Bladder dysfunction requiring urinary catheter usage is a common occurrence after a spinal cord injury. This can have a significant effect on a person’s quality of life, and is associated with important potential medical complications. Over time, people with a spinal cord injury often change the way they manage their bladder. The reasons for this have not been well studied. This project will gather information from interviews and small groups to identify psychological and societal factors which influence how people with spinal cord injury choose a method of bladder management. These factors will then be tested in a group of 600 people living with a spinal cord injury from across North America using a statistical method of analysis that is commonly used by consumer market researchers. This will determine which factors are the most important, and how these factors vary in importance and relevance among people with a spinal cord injury as a whole, and within specific subgroups.
We will use this information to better understand how people with a spinal cord injury decide on a method of bladder management, and to identify psychosocial barriers related to different methods of bladder management that should be better addressed by healthcare team members. We hope this statistical data can be used to eventually create an online decision support tool which will be capable of providing people with a spinal cord injury with individualized recommendations and information. This has the potential to improve the bladder related quality of life among people living with a spinal cord injury.