Today I would like to introduce the „MS Bladder Check Tool“, which was developed by a team of neurologists, urologists and rehabilitation specialists. It is designed to enable rapid management of bladder dysfunction caused by multiple sclerosis.
Bladder symptoms occur in a high percentage of MS patients, although the figures vary in different scientific sources. For many MS patients, problems begin within the first five years. However, until now, the symptoms of around half of people suffering from bladder disorders have not been treated. This is why the international team of experts from nine different countries has developed a simple questionnaire that patients can fill out while waiting for their appointment with a neurologist or MS nurse. The aim is to treat bladder disorders as quickly as possible, preferably when they occur, so that quality of life remains at a high level.
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Table of Contents
The bladder disorder questionnaire
The paper by Peter Flachenecker and others contains nine questions that give a fairly good initial overview of whether a person has bladder problems. There are three possible answers. Either „Yes“, „No“ or „Don’t know or not relevant“.
Prof. Dr. Peter Flachenecker leads our Module 5 of the Multiple Sclerosis Management Master’s program, which focuses on symptomatic therapy. He is Chief Physician at the Quellenhof Neurological Rehabilitation Center in Bad Wildbad and one of the leading rehabilitation experts in Germany. Here is the questionnaire:
- Does the number of times you urinate per day impact your daily life?
- On a typical night, do you have to get up more than once to urinate?
- Do you often experience feeling the urge to rush to the toilet to urinate?
- Have you experienced urinary leakage within the past six months due to an urgent need to urinate?
- Do you experience urinary leakage during any kind of physical effort (eg. Walking, coughing, sneezing or standing)?
- Do you have difficulties starting to pass urine?
- Do you experience weak stream when passing urine?
- Do you experience having to pass urine again shortly after you have urinated, i.e., “double voiding”?
- Have you received any antibiotics for a bladder infection within the past six months?
If you answer ‚yes‘ to at least one of the questions and feel that it is affecting your life, you should speak to your neurologist or MS nurse. If you are unsure of the answer, please speak to your neurologist or MS nurse to clarify whether your situation is a yes or no.
What I like about the questionnaire
The questionnaire is easy to understand and uses normal language instead of medical terminology. Nine questions are easy to answer. It doesn’t take long, and even a person suffering from fatigue will probably be able to answer it in time before entering the doctor’s office or the MS nurse’s office. The small sketches are an additional help to understand the questions properly. Filling out a questionnaire can be an easy first step to start the conversation about bladder disorders if you’re embarrassed to talk about it at all. And please remember that a bladder disorder caused by multiple sclerosis is not your fault and you should not be ashamed of it.
The tool is very time-saving and the questionnaire can be handed out at any regular appointment. In this way, both newly diagnosed patients and people who have been living with MS for many years can be assessed. Regardless of whether the symptom is new or has been present for a long time but has not yet been treated, all patients can be scanned and treated if necessary.
Why is the treatment of bladder disorders so important?
Bladder disorders can have a variety of effects on a person’s life. If someone suffers from incontinence, he or she may withdraw from social activities such as meeting friends or playing sport for fear of leaking urine in public. This is certainly an additional psychological burden.
If sleep is disturbed because you have to go to the toilet at night, this can affect other symptoms such as fatigue or cognitive impairment. Rushing to the toilet can increase the risk of falling. And these are just two possible negative consequences.
Remaining urine can cause bladder infections and bladder damage. In the worst case scenario, the backlog can even damage the kidneys. Bladder infections are not good for general health and well-being. They can have a negative impact on the progression of multiple sclerosis.
Leading experts such as Gavin Giovannoni explain that every piece of the puzzle that can be positively influenced helps to reduce a person’s disease burden. Treating bladder disorders and preventing bladder infections is one such piece of the puzzle.
Status of the MS bladder check tool
At the moment (May 2024), the MS bladder check tool has been developed by experts with the help of MS nurses and small pilot trials. It will be tested in a larger cohort in the UK. Once this trial has been successfully completed, it will be promoted to patient organizations, specialist MS outpatient clinics and via social media. The questionnaire will also be translated into other languages.
I asked Prof. Dr. Peter Flachenecker if it is okay to talk about it now at MS-Perspektive and he agreed, as the scientific work has been completed. If you think from the questionnaire that you have a bladder disorder that should be investigated and treated, please talk to your neurologist or MS nurse.
Full paper
If you are interested in the full paper, you can find it on PubMed: https://pubmed.ncbi.nlm.nih.gov/38194894/
MS bladder check tool: Development and validation of a patient awareness tool to facilitate timely management of lower urinary tract dysfunction due to multiple sclerosis
Peter Flachenecker, Bertil Blok, Giampaolo Brichetto, Jalesh N. Panicker, Véronique Phé, Kim Bundvig Barken
If you have bladder problems that are negatively affecting your life, please speak to your neurologist or MS nurse. Bladder disorders can be treated very well and there are a variety of drug and non-medication supports available.
See you soon and try to make the best out of your life,
Nele
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