Adnkronos (Adnkronos) – Postponing a trip, skipping an outing, constantly checking where the nearest bathroom is, or experiencing discomfort with intimacy. For some people with multiple sclerosis (MS), these daily sacrifices are due to pelvic floor dysfunctions that can affect sleep, work, relationships, and social life, but which are still difficult to discuss.
And this isn't a marginal problem: in a survey of 14.268 people with MS, 41% reported moderate or severe bladder symptoms, 30% bowel symptoms, and 42% sexual symptoms. Embarrassment, modesty, or the belief that these symptoms are an inevitable consequence of the disease can prevent them from being shared during a neurological examination.
If they aren't identified, needs that significantly impact a person's life risk being overlooked during clinical assessment. Finding the right words to address them with a neurologist is the first step toward understanding their nature, receiving an appropriate response, and participating more consciously in treatment decisions. This is the foundation of shared decision-making, a model—according to a Novartis statement—through which physicians and patients combine clinical expertise and experience with the disease to jointly guide decisions and define a personalized treatment strategy.
This approach is actively supported by Novartis through its Instagram profile @scaccomattoallaSM, which was created to provide information and tools to people with MS and encourage more open discussion with their healthcare team.
"In multiple sclerosis, pelvic floor dysfunction is not simply caused by muscle weakness, but can also manifest as alterations in bladder, bowel, and sexual function. It is therefore essential to understand the prevailing mechanism and its impact on daily life, so as to define realistic goals and appropriate interventions for each individual," comments Alice Laroni, Associate Professor of Neurology at the Department of Neuroscience, Rehabilitation, Ophthalmology, Genetics, and Maternal and Child Sciences – Dinogmi, University of Genoa. The heterogeneity of urinary dysfunction associated with multiple sclerosis – Novartis emphasizes – is reflected in the wide ranges reported in the literature, related to the different populations and methodologies considered in the studies: from 37% to 99% for urgency, increased urinary frequency, and urge incontinence; from 34% to 79% for urinary retention and difficulty emptying the bladder; In 50-60% of people, symptoms of overactive bladder and difficulty emptying may coexist.
Such diverse clinical presentations reflect a broader characteristic of multiple sclerosis, which can manifest and evolve differently from person to person. Therefore, there is no one-size-fits-all solution: personalization must encompass the entire treatment process, from the most appropriate pharmacological treatment for disease control to interventions aimed at symptoms, taking into account the individual's clinical characteristics, priorities, and life goals. For this to happen, it is essential that the patient feels free to share their experiences with the neurologist, including their most intimate concerns and how they impact their daily life. Digital monitoring and preparation tools, such as the SM Checklist, co-developed by Novartis, the Multiple Sclerosis Association of America (MSAA), and expert neurologists as part of the "Checkmate to MS" campaign, can be of great help in facilitating open and participatory discussions with the neurologist.
"Available evidence associates active patient involvement with greater treatment satisfaction, improved quality of life, and improved therapeutic adherence. This moves beyond a vision focused exclusively on disease control, favoring an integrated care strategy in which different specialties converge around the individual's goals," Laroni continues.
This vision translates into comprehensive, multidisciplinary care for individuals with MS, in which pharmacological management of the disease is combined with interventions aimed at its various manifestations. Pelvic floor dysfunction may require the collaboration of a neurologist, physiatrist, specialized physiotherapist, urologist, gynecologist, gastroenterologist, and psychologist. The rehabilitation program is tailored to the individual's clinical condition and may include muscle strengthening and control exercises, biofeedback, neuromuscular electrostimulation, physiotherapy supervision, and, when appropriate, telerehabilitation. Available evidence suggests that these interventions can help reduce urinary leakage and lower urinary tract symptoms, with benefits for quality of life, although larger studies and more standardized protocols are needed.
For these opportunities to translate into concrete solutions for people, scientific progress must be accompanied by collaboration among all stakeholders in the healthcare system. This shared commitment is necessary to integrate innovation into care pathways and promote equitable and timely access. Novartis's contribution also fits in this direction, from scientific research to initiatives dedicated to informing and actively engaging people with multiple sclerosis. "Innovation must translate into pathways capable of addressing the complexity of multiple sclerosis and individual needs. For Novartis, this means combining research with tools that foster dialogue between individuals and their healthcare team, promoting more informed decisions and increasingly personalized care," says Chiara Gnocchi, Country Communications & Advocacy Head of Novartis Italy. "Listening, clinical appropriateness, and individual priorities are complementary elements of truly individualized care."
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