Bowel problems often unreported by MS patients to their doctors

Patients unwilling to talk about bowel symptoms because of stigma, study says

Patricia Inacio, PhD avatar

by Patricia Inacio, PhD |

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Illustration of digestive system.

Bowel symptoms go largely unreported among people with multiple sclerosis (MS), mostly due to the unwillingness of patients to talk about their symptoms with their doctors, according to a recent study.

However, a self-reported questionnaire called Neurogenic Bowel Dysfunction (NBD) may help screen patients for bowel symptoms without the need for a direct conversation with a healthcare provider.

“Validated questionnaires may be more effective than face-to-face discussions” to diagnose bowel symptoms, according to researchers. “NBD scores appear to be a simple discriminant tool for screening and are easy to use in clinical practice.”

The study, “Multiple sclerosis and bowel symptoms: Frequency and barriers to their management,” was published in the journal Multiple Sclerosis and Related Disorders.

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About two-thirds of MS patients experience bowel symptoms

About two-thirds of MS patients experience bowel symptoms, which can manifest as constipation, or infrequent bowel movements, defecating difficulty, diarrhea, or a reduced ability to control bowel movements. These issues can have a significant impact on quality of life, leading to pain, discomfort, and a lower ability to engage in work and social activities.

However, despite recommendations, healthcare professionals don’t usually take steps to diagnose these symptoms early in the course of MS or to help patients manage their bowel issues. Patients also sometimes have a hard time talking to their doctors about bowel symptoms, as some consider the topic stigmatizing.

In the study, a team led by researchers at the University of Rouen Normandy, in France, set out to investigate how often MS patients don’t report their bowel symptoms to a doctor. They also examined the overall frequency and nature of bowel symptoms and which factors were linked with patients seeking bowel care.

The analysis included 369 adult MS patients either seen at an outpatient clinic (121 patients) or who were part of MS Healthcare Network and recruited via email (248 patients). Patients were asked to complete a number of questionnaires about their bowel symptoms, stool, and constipation severity. They were also asked to report the duration of their bowel symptoms, whether they had sought care for those symptoms, and which care they had received and from whom.

Participants had been diagnosed with MS a median of nine years before participating in the study. In general, those recruited from the outpatient clinic were younger, lived more often in urban areas, had been diagnosed at a younger age, and had less disability than those from the network, which are all factors consistent with easier access to care and earlier diagnoses and treatment.

Several reasons for not reporting [bowel symptoms] were given, the most common being not willing to discuss with a doctor and preferring to self-manage the problem.

47% of patients report at least 1 bowel symptom

In total, 174 patients (47%) reported to have experienced at least one bowel symptom, most commonly constipation or fecal incontinence, or the inability to control bowel movements. However, of the 161 who answered questions about symptom management, 66 (41%) said they did not report the symptoms to a healthcare provider.

“Several reasons for not reporting [bowel symptoms] were given, the most common being not willing to discuss with a doctor and preferring to self-manage the problem,” the researchers wrote.

Of the 59% who saw a doctor for their bowel symptoms, most visited a general practitioner and about one third were taking or had taken medication for their symptoms — mostly laxatives or drugs to help with diarrhea.

Statistical analyses showed that patients who had bowel symptoms for five or more years were significantly more likely to visit a doctor than those with symptoms for a shorter time. No other factors were associated with seeking help from a doctor to manage bowel symptoms.

The researchers then examined if the NBD self-reported questionnaire could be used to identify patients with bowel problems needing management. The tool includes 10 multiple-choice questions covering symptoms related to constipation and fecal incontinence, and divides patients into four scoring groups: very minor symptoms (scores of 0-6); minor symptoms (7-9); moderate symptoms (10-13); and severe symptoms (14 or higher).

Among the 329 patients who answered the questionnaire, symptoms were very minor for 81.4%, minor for 7%, moderate for 6.7%, and severe for 4.9%. These scores were significantly associated with constipation, incontinence, and the presence of bowel symptoms in general. They were also generally higher in the network group, who had more advance disease.

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The team then found that having a score of two or higher on the NBD questionnaire could discriminate between patients with and without bowel symptoms with an accuracy of 86%. Consistently, having a score of at least two was a significant predictor of bowel symptoms.

Other factors that significantly predicted the presence of these symptoms were being a woman, visual impairments, a history of digestion problems, longer MS duration, and abnormally shaped stools. The likelihood of bowel symptoms was 4.6 times higher among women, being the strongest risk factor.

Overall, these findings show that the NBD score may be used in clinical practice to diagnose bowel symptoms, helping to avoid situations of poorly managed symptoms because “the patient doesn’t talk, and the doctor doesn’t ask,” the study stated.