Urinary tract dysfunction in Multiple Sclerosis – Why do patients go untreated?

Symposium aims to prevent unnecessary suffering MS patients

During the 8th International Meeting of the European Association of Urology Nurses (EAUN) in conjunction with the 22nd Annual EAU Congress a symposium was held to discuss how to deal with Multiple Sclerosis (MS) related urinary tract dysfunction. Dr. A. Kaufmann, Centre of Continence and Neuro-Urology, Clinic Maria Hilf GmbH, Mönchengladbach (DE), chaired an interesting session that covered both neurological and urological aspects. At the same time it was very oriented on practical issues. The symposium was sponsored by Astra Tech.

The session started with an introduction by Dr Albert Kaufmann. He made an inventory of the audience. As expected, most of those present were nurses and the knowledge about MS and urinary tract dysfunctions was limited. He then described common urological problems related to MS.

Recognise patients as early as possible

The next speaker was Professor Clare Fowler,Department of Uro-Neurology, UCL Hospitals, London (UK). She gave a presentation on the fundamental aspects of urinary tract dysfunction in MS. She stated that bladder symptoms in patients with MS are very common. They often have a profound effect on the
patient’s quality of life, but also on the long-term overall health. Involvement of the spinal cord is thought to be the pathophysiological basis for urinary tract dysfunction in MS, resulting in detrusor overactivity and a variable component of incomplete bladder emptying. It is a paradox because it is characterised by an increased urge to void combined with difficulties in emptying the bladder when voiding, often resulting in post-void residual (PVR).

It is of great importance to recognise patients with incomplete bladder emptying as early as possible. In many cases the patient is unaware of this problem, which might lead to symptoms that will affect the patient’s quality of life. Most common are symptoms such as urgency, frequency, urge incontinence, urinary tract infections and nocturia. These may effect not only the function of the urinary tract, but also the patient’s ability to perform daily activities.

Treatment of urinary tract dysfunction in MS

The treatment should be tailored to the condition of the patient. Professor Fowler suggests that this is initiated by giving anticholinergic treatment and at the same time measure post-micturition residual volume (PVR) by a portable ultrasound device. If PVR is less than 100 ml, the anticholinergic treatment should be continued. Since PVR may change over time, follow-up and information to patients about bladder emptying problems is important. If PVR is above 100 ml the patients should be instructed to practice clean intermittent catheterization (CIC) and then to continue on anticholinergics.

In some patients it is recommended to combine the anticholinergic treatment with anti-diuretic hormones (DDAVP). However, it should be given only once a day and never to patients over 65 years of age or to patients with dependent leg oedema immobility.

Prof. Fowler completed her lecture by describing some interesting data from a recent study on detrusor injections of botulinum neurotoxin type A (Botox®) in patients with neurogenic urinary tract dysfunction. In the study, 31 MS patients were given injections of 300 units of Botox® using an minimal invasive utpatients technique. Patients were followed for up to 16 weeks and the results were quite impressive. Both frequency and urgency of voiding were significantly diminished and the patients experienced an increased quality of
life, even though the treatment involved having to perform CIC.

Prevalence of sex, bowel and bladder dysfunction

The session continued by Reg. Nurse/Urotherapist Jannicke Frugård, Section of Urology, Dept of Surgery, Haukeland University Hospital (NO) who spoke about prevalence of bladder, bowel and sexual dysfunction among MS patients in an early phase after diagnosis. Most MS patients experience some sexual, bladder
and/or bowel problems during the course of the disease. A recent study was done by the speaker’s department on the prevalence of these problems among patients 2-5 years after diagnosis. The study population comprised a cohort of patients diagnosed in a three-year period (n = 56) in Hordaland County,
Norway. The patients were examined clinically, including scoring of the Expanded Disability Status Scale, and completed questionnaires (MS Quality of Life-54) related to bowel and bladder symptoms, sexual problems and health-related quality of life.

More than half the patients had bladder and sexual problems. The frequency of self-reported bladder problems corresponded with the relatively high levels of residual urine. The presence of these problems was associated with lower scores on the quality of life scales. The bowel problems reported were markedly
associated with the quality of life scores. Treatment and preventive strategies can manage many of these problems, and Nurse Frugård suggests an increased focus on these aspects of the disease when consulting patients as early as possible.

Clean intermittent catheterization
The next speaker, Nurse/Urotherapist Carina Thorén, Dept of Neurology, Karolinska University Hospital, Stockholm (SW) shared her experiences on how to teach CIC to MS patients. CIC is a well established practice for resolving residual urine. Patient acceptance is crucial to successful treatment, however, the disability caused by MS may present an obstacle. Acceptance can be achieved by improving the patient’s understanding of the treatment process and its risks.

The experience from Karolinska University Hospital is that a very practical approach should be employed. The basis of such an approach is an assessment of bladder function and its impact on the patient’s daily life. Methods used are: history, questionnaires and standard practices such as measurement of residual volume. Ensuring the patient’s perspective during this stage can radically improve his or her ability to embrace the following education stage, where the basics of anatomy and physiology are explained. Simple materials such as brochures and sketches can be used.

Nurse Thorén stressed the fact that this approach requires the urotherapist/nurse to adopt a coaching role. Practical exercises and detailed explanations about the CIC treatment method are used to help the patient overcome the obstacles caused by his or her disability. After learning the CIC technique the patient is provided with catheters for self-practicing at home. The therapeutic relationship enhances motivation whilst ensuring the patient understands the risks.

Networks between urologists and neurologists
The next speaker, Dr Albert Kaufmann focused on the necessity to create networks between urologists and neurologists. It is very important to inform the patient at an early stage about bladder dysfunction, the risks and – especially – the possibility to treat them. Often the neurological specialists have limited knowledge about bladder dysfunction and how to treat this complex condition. The urological specialist, on the other hand, has limited knowledge about MS and its treatment. Establishing networks between health-care
professionals to educate and support MS patients is therefore necessary. Before the network inMönchengladbach was initiated, the clinic saw 2-3 MS patients a month. Now, after displaying posters in the ambulances and waiting areas, distributing handouts to patients, handing out questionnaires about urinary tract dysfunction and opening a bladder hotline in the department of neuro-urology, the clinic is visited by 4- 5 patients a week. 10 of the new patients presented with advanced bladder destruction and 3 of these
patients showed renal insufficiency.

A case from Norway
A practical example of what constructive collaboration between urologists and neurologists can be like was presented by Nurse Frugård. To improve the care for MS patients with urinary tract dysfunction they started a project together with the neurology department in their hospital. They performed a study designed to increase knowledge about the interaction between bladder
symptoms and quality of life. This was done by offering a group of MS patients urotherapy with standardized assessment, education, counseling and appropriate individual treatment modalities.

Urotherapy is a rather new term in the field of urology. It intends to re-establish a normal bladder function in patients of all ages with different kinds of urinary tract dysfunction. Prevention of urinary tract dysfunction is also an important part of urotherapy.

The study population consisted of a cohort of 175 persons who showed symptoms of MS between 1976 and 1986, and were diagnosed before 31 December 1995. They were randomized into a treatment group and a control group. Both groups were asked to complete questionnaires about quality of life and bladder symptoms, using MSQoL-54 and I-PSS, with some additional questions about urinary tract infection and leakage at baseline and after one year. In addition, the treatment group was asked to complete a questionnaire about their experiences with consulting a urotherapist.

In the treatment group 55 of 85 patients consulted a urotherapist. The data are not analyzed yet, apart from the questionnaire about the experience consulting a urotherapist. 41 patients completed the questionnaire. A majority of the patients said that all MS patients should have the possibility to consult a urotherapist, and that the consultation should be offered soon after
the diagnosis. They also wished that education about bladder function/dysfunction was part of the general education given to newly diagnosed MS patients in the hospital. Most of the patients (93%) experienced the consultation as positive.

Preserving function
It has become clear that more than 70% of all patients with MS develop bladder problems. Most of them are untreated. It is very important to recognize patients
with urinary tract dysfunction and to diagnose which urinary tract dysfunction is causing the symptoms. The focus of the health-care professional should be on
preserving function, especially kidney function, as this is critical to life itself. The focus of people living with MS is usually on relieving distressing symptoms. Both
goals can be attained through an active partnership between the professional and the patient.

In these patients it is often necessary to inhibit neurogenic detrusor overactivity, and in most cases patients have to combine the pharmacological
treatment with CIC. In order to avoid urinary tract infections and future kidney dysfunction, treatment has to start as early as possible. Good education,
training and the building of networks between wellversed neurologists, urologists and nurses seems to be a solution that would help improve the patient’s quality of life. Because MS is a dynamic disease and urinary tract dysfunction often irregular, the neurourological follow-up of patients with MS is very important and has to be carried out lifelong.

Dr Kaufmann summarises the session: ”It is very important to inform the patients at an early stage about urinary tract dysfunction, what it may lead to
and especially – how we can treat the symptoms, thus avoiding unnecessary suffering”.