Hello there, and welcome to the Hidden Everyday.
This is my second post, and it a long one so please bare with me. In short, I was invited to a conference about Posterior Urethral Valves and I’ve given a summary of what was discussed in this blog. Being invited to it and volunteering within the renal/ urology research world makes me think it would be great to speak with others in a similar position as parents/ carers, so that we make sure our views and experiences are reflected in research (if you’re interested feel free to email me via thehiddeneveryday@gmail.com).
This post is a bit different to my previous post so I’ll write a less research based one soon, I’m aiming for one on nutrition, and in the mean time hope this one is useful. Finally, before I get into the main body of the blog, I just wanted to say that I hope you are ok today. PUV and thereafter can be a tough, confusing road and I hope through reading this blog it offers a little bit of support.
Background:
I started a research PhD when I found out I was pregnant with my son. For the last few years I have taken time of from my PhD as my son’s care/ his transplant/ the pandemic/ general life have been difficult enough to balance. Research is something I’ve always been interested in and seeing things from a carer perspective has made me think that patient experience, what is important to patients and carers, needs to be in the core of research… because, at times I’ve been frustrated about the questions that are unanswered within my son’s condition and treatment.
I saw an advert for parent/ patient volunteers to sit in on British Association of Paediatric Nephrologists’(BAPN) Clinical Study Group meetings; they are the committee which support anyone working in paediatric nephrology with their research into kidneys in the UK. As an organisation they want perspectives from Allied Health Professionals, Patients and Carers about kidney research. They are also making links with the urology world so that there is greater connection between the treatment and research into kidneys and the bladder. I was beyond pleased to hear this, as I’ve often felt baffled by who to go to for what and when my son was first diagnosed, I couldn’t make sense of the treatment pathways being separate, especially when the organs are so related. If you’re interested in this, Kidney Research UK have information about volunteering in this way.
At the end of November 2021 I was invited to the 1st International Study Group of Posterior Urethral Valves conference (online) to listen to professionals from around the world discuss their research and treatment pathways, I was also briefly asked to give my perspective on the experience of catheterisation. This is the first time this conference has happened, and research into this field has only been happening for 40 years, so, to me its exciting as it feels like there are researchers around the world who are working hard to find the best outcomes for our children. I wanted to use this blog post to sum up some of the things that have been discussed at this conference with my reflections so that it keeps you in the loop too.
From my small involvement with the research world of PUV and Kidneys I get the impression that there are a lot of clinicians and researchers who want to hear the patient/ carer perspective so that research can reflect the needs of the patient group properly. If you’ve found this blog you may have lots of experiences of urological/ renal conditions and treatment, in particular the reality of managing health alongside the everyday, we also know what does and doesn’t work for our kids at home and in hospital/ clinic. If its of interest to you to get involved with advocating within research, please feel free to email me at thehiddeneveryday@gmail.com so we can come up with a plan together. As a forewarning, I am not sure how the group will structured at the moment and everything is voluntary, but I think the key thing is to see who is interested and take it from there. At the very least we can have a chat and I can make sure the views are reflected in the meetings I attend. I’m keen to do things online and in an accessible way so please feel free to give me an email it would be great to hear from you.
Research Digest: 1st International Study Group of Posterior Urethral Valves: A summary
The conference was online and consisted of a large delegation of attendees from all round the world. The aim was to create a community of shared learning, practice and research so that clinicians around the world can support each other to best care for children.
Lots of the sessions discussed the technical surgical side of things, which instruments to use how to approach it, best practice, etc. I won’t go into this side of things, but I’ll share the reflections that I had that I felt I understood. I sat in as much as I could but I was juggling childcare and the conference so no doubt will have missed something.
As an overall reflection of the conference, there is a greater awareness of the need for more psychosocial support for patients. Some hospitals are set up to have social work, psychological support and family support alongside regular clinics. There is limited consistency with what is available and the level of support but it was reassuring to see that this was discussed.
Occasionally the terms compliance or non-compliance were discussed. Basically how well a child/ carer sticks to the child’s medication/ fluids/ care management. In my view, the care for a child with PUV, the subsequent care required for renal/urological/comorbidities is complicated and difficult to manage alongside everyday life, work, school etc. It’s difficult to share the load of this care, then throw extended hospital admissions in, it makes ‘compliance’ difficult to manage. It made me think that by sharing the patient/ carer experience of everyday life perhaps we can at least raise the question about whether a treatment plan is realistic and manageable.
Antenatal Session:
It was good to hear that the general feeling is that there should be more scanning and support, in some cases early intervention while baby is in the womb is possible, amniotic shunting. I think from my own experience I feel that this should be a standard for all pregnancies. When I was pregnant the clinical assumption was that as a low risk mother I’d have a low risk baby, which meant that my last scan was at 20 weeks and the PUV were not picked up until after my son was born, even when I didn’t feel right it was put down to me being an ‘anxious’ first time mother. It would be useful for there to be more awareness about PUV, a right to access further support if you feel something is wrong, and also for sonographers to be more aware of what PUV is and clinical risk factors to be evident.
Neonatal Session:
I was blown away by this session, in particular by the Sick Kids hospital in Toronto. They have a diagram which shows how a child should be assessed and which treatment options are best for them. Later in the conference Sick Kids also talked about data analysis they have done which has allowed them to create a model to predict when children will need different types of treatment. Pathway. I suggested that this would be an excellent tool to help for patients and carers to see the thinking process and what is likely to happen following a diagnosis and progression of disease.
From the discussion between clinicians and researchers at different centres, there isn’t a completely universal approach to treating PUV and different hospitals have different approaches for example when to introduce a drug or at which stage to do specific surgical interventions. There was lots of discussion about when valves are removed and also the criteria for their removal, some children have completely blocked ureters and some have partial. The purpose of having these discussions around best practice to make sure care for all children is appropriate.
Within this session there was also a discussion about the use of Oxybutynin. There is a Randomised Control Trial now taking place for the use of this drug, what this means is that children who are eligible for Oxybutynin will either be offered this or an alternative treatment. In essence the purpose of the research is to find which treatment is the most appropriate.
Bladder Dysfunction in PUV:
Bladder dysfunction and continence were discussed in this session. In my experience, from birth the concept of incontinence is often mentioned and so I was led to believe that my son would never be continent. Then fast forward a couple of years and early potty training is mentioned. I found it a massive inconsistency to both think your child will be incontinent and then to encourage early potty training for continence.
This was the approach suggested at the conference, please note if you’re about to start or thinking about potty training run this approach by your clinical team and make sure they are happy with the approach:
- For boys with PUV there is less sensation in the bladder so they may not feel the urge to wee although the bladder is full or recognise they are weeing.
- When? Start potty training early, not necessarily when a child shows signs of wanting to do it. The benefit of this is that clinicians can see how the bladder is working, its capacity and can make appropriate interventions and assessments. An ideal age to start would be
- How? Potty train by the clock, a child should urinate approximately every 2 hours. Set an alarm or watch the clock that you and your child can use to guide when to use the toilet. Double voiding is encouraged to remove any residual, basically asking a child to wee after they have done a wee.
Other resources are available on the ERIC https://www.eric.org.uk/ website.
Our personal experience of potty training. I got so confused by the various googling of potty training that I wasn’t sure of the best approach, in particular with the ureterostomy. So I made the belts and then we had a potty around the house for ages and didn’t put any pressure on my son. I think we tried out multiple different types of potty too. I think from around 2 years old we practiced sitting on it (usually in front of the TV) and then gradually my son started to use it. I then got some clear advice and after a while we started using the timed approach and that seemed to work, fewer accidents etc. Potty training coincided with multiple long hospital admissions, that was tricky to manage. We went through several rounds of ‘continenet-ish’ then nappies then back again. The game changer was just saying to my son that we’ll get rid of the nappies and starting regular catheterisation.
Back to the conference. Some of the procedural things that were discussed were, when to choose different interventions like catheterisation and surgery. The general consensus was that clinicians will treat each case individually, but always try and approach treatment with the least invasive option first. In some centres there are diagrams of decision trees about treatment pathways, in my personal opinion it would be useful for parents to have a copy of this when they are speaking with clinicians so that next steps don’t come as a shock, but I’m not sure if this was possible.
The last thing discussed in this session was about Visual Urodynamic Assessments (VUD) which is where a child is scanned while they wee. The logistics of this are that a child is lying down on a bed with the scanner above them taking scans as they urinate. Usually in these rooms a film/ distraction can be put on and a parent can be present. The research asked patients how they felt about it, and the results said that patients felt the procedure was better than they expected it to be.
Kidney Function:
This session discussed the management of kidneys alongside PUV and bladder dysfunction. Presentations discussed when and how to monitor kidney function, and identify markers of decline or improvement and what this means for a treatment pathway. This was discussed in a clinical way, and were referred to as ‘Risk’ profiles. I did wonder whether having a risk profile shared with families with a rough idea of the next steps may be useful for patients and families to monitor their health at home, identify when to seek help and also identify/ prepare for what next steps could be.
Within this session they talked about managing the bladder to delay the progression of renal disease and also what to do if a child needs transplantation. Management options included catheters, medication and surgical options, like a ureterostomy or mitrofanoff.
Blood Pressure was also discussed in this session. They discussed that BP is regulated by the kidneys, and in some cases with renal disease following PUV there can be complications with the cardiovascular system, this is why it is monitored. In some centres they support patients by training carers to do observations on their child BP, temperature, urine analysis etc so that if calling for advice, simple measurements can be taken.
Research in PUV
A big question what causes PUV? The explanation given to us on my son’s diagnosis was that is it’s a case of bad luck. I’m not sure I can ever accept this. It was great to hear that research into what causes PUV is being done, in addition into research treatment of the bladder and ways to protect the kidney before damage occurs, one example is research using stem cells. Treatment and support for PUV patients is relatively new (40 years) and so this conference, alongside a PUV researchers network aims to unite to develop equal and appropriate treatment pathways and protocols for all children for use internationally. There is also research into machine learning and using data to develop treatment pathways to treat children and give them the best help before illness occurs.
So, in short that is the outcome of the conference. There was lots of discussion and I’m sure it’s the start of lots more to come. I will keep asking and finding out about research happening and when I can will share the information. It was great to attend this conference and learn what is happening within research/practice to treat our children. Generally I got the impression that there are a lot of people who are doing their upmost to try and help our children, but what I think is missing is the reality and the patient/ carer voice and in what a PUV diagnosis is, and what it means.
Thank you so much for reading, I hope to hear from some of you soon and hopefully as a group we can make sure the patient/ carer voice is in research.
Have a good day,
Lucy
The Hidden Everyday 