Has managing your bladder been even more challenging amidst the COVID-19 crisis? Help us and your Urology Clinicians understand the obstacles you face in bladder care, what’s working well, and whether infections are a problem, via our private and confidential over-the-phone survey.
This month we were asked to write a piece for the Spinal WA e-newsletter. It was a great chance to explain why we’re focused on bladder health, what we’ve learned from our recent study that people with chronic SCI can run with, and where we’re going next. Here’s the full-length version:
The big issue of the bladder
As most of you reading this will be absolutely aware, bladder problems and urinary tract infections (UTIs) are rated as among the greatest long-term challenges people with spinal cord injury (PwSCI) face. The bladder won’t drain as and when you’d like it to, but may empty at will when you don’t, bringing frustration and costing valuable time and money to keep up with catheters, ongoing tests, treatments and appointments. And UTIs can be devastating, hard to get rid of and a major way to land you back in hospital.
My colleagues and I knew this, so we formed the ‘SCI Research Team’ (SCIRT – an apt acronym for our all-female squad!) and have focused our energies on understanding the neurogenic bladder better and doing something tangible to reduce UTIs. As I collected pilot data from patients’ medical records at the Spinal Unit, I really started to get just how horrible bladder dysfunction in the early days after SCI can be. Amidst the physical and emotional pain and devastation of the trauma itself, the distress of suddenly needing round-the-clock catheters, getting one infection after another, leaking urine and feeling shocking, was hard to comprehend. This has made us all the more determined in our mission.
We teamed up with some incredibly experienced and dedicated neuro-urology specialists and senior nurses, along with clinicians in Infectious Disease, Pharmacy and Rehabilitation Medicine. We’re working with the best people, but clinical research is so hard to do! I could write a very tedious book on the challenges of securing funding and jumping across the endless red tape required before even starting a project in our hospitals. But doing the actual research is brilliant and gratifying. Our collaborative research demonstrated that inpatient bladder care is of a very high standard in WA, closely reflecting published evidence. Some PwSCI living in the community continue to tap into this wealth of knowledge and support, but the system is far from perfect, with other people experiencing various obstacles to accessing this care.
One shiny gem we plucked out of the long rough of applications and baseline studies is the knowledge that early UTIs after SCI can set people up for higher numbers of ongoing UTIs. Findings like this enabled us to meet the publishing challenge – papers are vital for attracting further grants – and decide the main objective going forward… Preventing those first infections.
With a better understanding of the issues surrounding SCI bladder health in WA, and after more paperwork than you might possibly imagine, we’re now undertaking a clinical trial of a promising new treatment. It involves getting in early – during the first 10 days after SCI – and replenishing the naturally protective ‘GAG’ layer of the bladder wall, which starts breaking down immediately after SCI. Our first patient has just enrolled, and we hope that preventing early UTIs will minimise further infections and bladder-related complications throughout his recovery journey. GAG therapy has helped reduce UTIs in other patient groups, so we’re feeling quietly but cautiously optimistic. We also hope to test the treatment in patients with long-standing SCI and frequent ongoing UTIs in the not-too-distant future.
As well as working in the hospital with new patients, we continue to learn from the experts in SCI bladder health. If you’re living with SCI in the WA community, please think about adding your story to the mix. We’re conducting over-the-phone interviews and would really value your input on how you’re managing to follow Spinal Urology recommendations. Gift cards are provided as a thank you to those helping us build an accurate picture of what is working well – and what is not – when it comes to ongoing post-SCI bladder management.
What else have we discovered so far??
All this research is still in progress, but I’m sure PwSCI just want to hear what we’ve uncovered that’s actually useful now! This is fair and so here are some pearls of our wisdom (lol):
- Intermittent catheterisation (IC) at least every 6 hours is the “best practice” way to empty the bladder for many. Combined with maintenance of fluid intake to minimise bladder volumes over 500mL, self-IC is the optimal long-term method for minimising UTIs and other complications. But it requires dedication and proficiency in clean IC technique in a range of settings. Suprapubic catheterisation (SPC) can be a more realistic option for those with limited hand function. It can bring greater independence and the right catheter and care regime can minimise UTIs. A urethral indwelling catheter (IDC) is not recommended unless as last resort, because of associated higher risk of UTIs and other complications.
- If you are on self-IC, a high bladder volume (≥800mls) and temporary IDC are both associated with increased risk of UTI during the week following. Good to know. An IDC may be needed from time to time and can be useful during long-haul travel. In this case, the UTI risk should be considered, but an IDC is probably preferable to minimising fluids and skipping self-ICs.
- Urology follow-up and support for PwSCI in WA is patchy. Some folks on self-IC cope very well, while others experience challenges in fitting catheters around work and sleep, sometimes adapting their Spinal Urology team’s recommendations in ways that could increase the odds of UTIs and complications. Not everyone is reviewed by a Spinal Urology nurse/doctor during the first year out of hospital, nor seen as regularly as is recommended over the years. Some PwSCI are reviewed regularly and report positive outcomes associated with the advice and trouble-shooting this enabled.
- It can take more than a year to get your head around bladder care. Some people who have lived longer with SCI reported it took ages (and infections, bladder stones, trips to hospital) to fully appreciate the importance of diligent bladder self-management, finding that taking the extra care does pay off.
From research to rolling out real change
By sharing all we learn with policy makers in WA Health and relevant Government agencies and continuing to work with our brilliant WA doctors and nurses, the knowledge gained will inform the design of targeted education and treatment programs to improve bladder health and quality of life for people impacted by SCI now and in the future.
We’d love to keep in touch, hear your thoughts and involve you in our research. Please follow us on Facebook at Better Bladders or ask to join our Better Bladders in Private closed Facebook group (email: email@example.com).
Background: The major effects of traumatic SCI on bladder function is rated as one of the greatest long-term challenges people with SCI face. Bladder management is complex and differs at spinal units around Australia and New Zealand. Symptomatic urinary tract infection (UTI) is common, often difficult to eradicate once established, and is a major cause of re-hospitalisation for people with SCI. Relationships between early bladder management and urological outcomes, including subsequent UTI rates, are largely unknown.
In Western Australia (WA), early management takes place at Royal Perth Hospital (RPH) and, when medically stable, patients are rehabilitated at Fiona Stanley Hospital’s State Rehabilitation Service (‘Spinal Unit’). In most cases bladder management at RPH is urethral indwelling catheterisation (IDC). IDC is particularly important for continuous drainage during the first 7-10 days, while the bladder is flaccid and diuresis occurs. Once a patient is transferred to the Spinal Unit, the IDC is removed if clinically feasible, and unless the patient can spontaneously void, intermittent catheterisation (IC) is then administered by nursing staff (‘staff-IC’).
According to Spinal Unit clinicians and published SCI bladder management guidelines (summarised by Wright & Bragge, 2015), IC at least every 6 hours and maintenance of fluid intake to minimise bladder volumes over 500mL is considered best practice for post-SCI bladder management. For most patients, IC is the optimal bladder emptying method to minimise urinary complications and preferable to IDC for reducing UTI frequency.
WA’s Spinal Unit is one of the few in Australia and New Zealand where staff-IC is routinely performed until the method of long-term management is decided and implemented – preferably self-IC, otherwise suprapubic catheterisation (SPC), or much less frequently, ongoing IDC.
Our WA Research, 2016-2018:
We have conducted three parallel studies examining current in-hospital practices in bladder management and UTI incidence following traumatic SCI in WA and the views of clinicians and people with SCI about how bladder care has been delivered/received. These studies were funded by the Neurotrauma Research Program, with a contribution from the Spine and Limb Foundation. Each received ethical approval by the SMHS HREC.
1) Retrospective Clinical Audit
We undertook a cohort study of 70 patients with new traumatic SCI managed at RPH and the Spinal Unit between Jan 2015 – Feb 2017 inclusive. Bladder management practices, UTIs, asymptomatic bacteriuria episodes during staff-IC periods, and length of hospital stay were mapped using data collected from hospital electronic databases, medical records and nursing fluid balance charts. During staff-IC periods, intervals between catheters of ≥8 hours and bladder volumes ≥800mls were considered protocol anomalies (clinically meaningful departures from best practice), as discussed with Spinal Unit clinicians prior to data collection.
Results in our paper (https://www.nature.com/articles/s41393-019-0337-6) describe:
- How Nurses very closely adhered to the 6-hourly staff-IC protocol.
- The rate and timing of UTIs (with very few caused by multi-resistant organisms).
- How factors like being female and having a more complete SCI were associated with higher UTI rates and longer hospital stays.
- How having an IDC in for longer was associated with having earlier UTIs, which in turn was associated with higher UTI rates.
- How for those on self-IC, having a high bladder volume (≥800mls), or needing a temporary IDC, were both associated with an increased risk of UTI during the following week.
2) Perceived barriers and facilitators to optimal bladder management
Clinicians involved in SCI bladder care at FSH and RPH (6 doctors/consultants, 32 nurses) attended recorded focus groups to discuss the extent to which current practice matched published recommendations, and the barriers and facilitators they experienced to optimising bladder management. Recordings were transcribed and analysed for recurring themes.
Results in our paper in preparation describe:
- Clinicians’ feedback on how closely current practices mirror published evidence on SCI bladder management, and the (few) points of difference.
- Perceived facilitators and barriers to optimisation of bladder care. Clinicians described a rich, strong culture of practice; and also concerns about how health service changes have created significant challenges over recent years.
3) The lived experience of SCI bladder dysfunction and early management
This study investigated the perspectives of people with SCI who were the subject of our clinical audit, specifically on the bladder care and education they received in hospital. As well as furthering our understanding of the barriers to optimising SCI bladder care, the input of individuals personally affected by SCI has provided valuable insights into the personal experience of SCI and neurogenic bladder. Eleven individuals now living in the community (9 male and 2 female; aged 26-76 years; with various levels and severity of SCI; 3 able to void spontaneously, 7 managing with self-IC and one with carer-IC) participated in recorded over-the-phone interviews.
We have presented summaries at conferences and meetings attended by other Researchers, Nurses, Doctors and People with SCI, describing Participants’ impressions, views, thoughts and feelings…
- during the first weeks post-SCI in terms of their bladder dysfunction, beliefs regarding potential improvement, prioritisation of bladder issues;
- about the timing and quality of the education received, how well they understood it and were able to follow advice;
- about how supportive and approachable Spinal Unit staff were;
- about staff-IC, how decisions on long-term bladder management were made and the transition to self-IC;
- on preparedness for hospital discharge, coping at home and when back at work, how some have modified their bladder care regimes and whether urological follow-up has occurred.
Anyone living in WA who has incurred a SCI during the last 20 years – traumatic or otherwise – is now eligible to join our study. We’ll be recruiting for the next few months, so it’s not too late to get involved!
We’re learning so much already, especially that circumstances, experiences and bladder health realities are incredibly diverse. Why not add your story to the mix, ensuring we build an accurate picture of what is working well – and what is definitely not – when it comes to post-SCI bladder care in our community.
All we need is your time for ~30 minutes over the phone. Your privacy and confidentiality are guaranteed, and because we so appreciate your input as an expert in the field, we will provide a $50 gift card as thank you.
Everything we learn, particularly about the things people are finding most difficult in terms of catheterising, dealing with UTIs and accessing resources and support in the community, will be shared with policy and decision-makers in Health and our clinical co-investigators. The knowledge will inform targeted education and the design of programs to improve bladder health and follow-up for people impacted by SCI now and in the future.
Because we know better bladders lead to better, happier lives!
Please email Louise.Goodes@uwa.edu.au or Gabby.Simpson@uwa.edu.au for more information.
We are looking for people living in WA with a SCI to collaborate with us on this study. Participation involves an over-the-phone interview for ~30 minutes and we will provide a $50 voucher to thank participants for sharing their time and knowledge with us.
Bladder management after SCI can be complex. We know from our recent research that while some people are coping well, others experience difficulty with self-catheterising, have problems with urinary tract infections and not all are receiving regular urology follow-up. We’d love to know more about the range of experiences and needs in the community. This will help our clinical collaborators at Fiona Stanley Hospital to optimise inpatient education for new SCI patients, plus study findings will inform community-based support services.
This and all our research efforts are about improving the lives of people already living with SCI, and those who will be impacted in the future.
Please send those who may be interested in participating in this project to this page, or suggest they email Louise.Goodes@uwa.edu.au for information. Thanks!
We are excited to open for recruitment this week for our trial of a novel way to prevent early urinary tract infection (UTI) in acute SCI.
This trial follows our recent clinical audit of bladder health and management of traumatic SCI patients at RPH and FSH, published in Spinal Cord and demonstrating the importance of preventing UTIs in the first days and weeks after injury. Neurological disruption to the bladder immediately compromises the integrity of the bladder lining, greatly increasing susceptibility to infection. Early UTIs are particularly detrimental to the ongoing urological and general health of individuals with SCI.
We are testing the use of glycosaminoglycans, or “GAGs”, naturally present as an important protective layer of the bladder lining. When compromised, such as after a SCI, this layer can be replenished by directly instilling GAGs into the bladder via a catheter. This approach has been shown to be safe and effective in preventing recurrent UTI in other patient populations, but has not yet been tested in acute SCI.
The trial assesses the safety and feasibility of commencing bladder instillations of GAGs in patients with SCI by day 10 following injury, before UTIs get a chance to take hold. Patients receive treatments at Royal Perth Hospital initially, and then at Fiona Stanley Hospital during the rehabilitation phase. We will observe trends in the rates of UTI and other bladder health measures, in comparison to untreated patients. Findings will go towards planning a larger multi centre trial using this approach.
Thank you to our clinical colleagues in ICU, Trauma, Orthopaedics and Rehab, and to the wonderful individuals with SCI we have been working with. Your valuable guidance and input has helped us get this far. We are determined to keep working with you to make a tangible difference to SCI health outcomes, in WA and beyond.
After spinal cord injury (SCI) people become very susceptible to urinary tract infection (UTI) because of the changes that occur both systemically and in the bladder lining immediately after injury. Early, frequent UTIs are extremely unpleasant, debilitating and often lead to chronic bladder/renal problems. Protocols for bladder management differ between spinal units and the association between protocols and UTI incidence is largely unknown. WA is seen as implementing the gold standard in bladder management in acute SCI, but there is no concrete data demonstrating this, and we know UTI is still a significant problem for many people during their initial hospital stay and beyond.
Professor Sarah Dunlop leads a multidisciplinary team studying SCI bladder health in WA. Bladder management practices, as well as the incidence of UTI, will be retrospectively mapped over a two year period at Royal Perth and Fiona Stanley Hospitals, and compared to established ‘best practice’ according to the literature. Researchers will also investigate the barriers and facilitators the SCI clinical staff experience as they strive to optimise acute bladder management.
This project, just like one cog in a complex machine, is part of a binational initiative to improve bladder and renal health for individuals living with SCI. Momentum has grown from a series of informal discussions, SCI research meetings, consultation with the SCI community and a dedicated session at ANZSCoS in Perth in Nov 2015, which saw the establishment of an Australian & New Zealand SCI Bladder (“ANZSCIB”) network.
SCI bladder health researchers in Australia and New Zealand are keen to push the envelope in this area, to deliver better outcomes for people facing devastating SCIs. UTIs hold people back, keep them sick and in hospital, add to incontinence and severely affect their social and working lives. Minimising UTI helps maximise quality of life after SCI.