Introduction

Multiple sclerosis (MS) is a chronic and frequently progressive autoimmune disease characterized by inflammation triggered by the immune system and demyelination of nerve fibers. This process results in brain and spinal cord damage, giving rise to a wide spectrum of symptoms [1]. It is estimated that approximately 2.8 million people worldwide live with MS [2], including approximately 34,000 in the Netherlands (Source: MS Association Netherlands). MS is more prevalent among women and typically emerges between the ages of 20 and 50 [3]. The disease manifests in various forms: benign MS, presenting mild symptoms; relapsing-remitting MS (RRMS), involving intermittent recovery; and primary and secondary progressive MS (PPMS and SPMS), characterized by a gradual worsening of symptoms [4]. The most prominent symptoms of MS include fatigue, cognitive impairments, and musculoskeletal issues.

MS-induced nerve and/or spinal cord damage can also lead to bladder and bowel dysfunction. A relationship exists between the degree of mobility impairment and the severity of bladder problems [5]. The most common bladder symptom is a sense of urinary urgency, with or without urge incontinence, stemming from reduced cortical control of the micturition reflex. Moreover, incomplete bladder emptying frequently occurs, due to 1) reduced detrusor muscle contractility stemming from decreased coordination by the pontine micturition center and 2) detrusor-sphincter dyssynergia, a functional obstruction due to urinary sphincter contraction during micturition [6]. Bowel dysfunctions arise from altered colon and/or anorectal function due to a lack of central control [7] including problems such as constipation, diarrhea, and fecal incontinence, among others. While bladder problems may occasionally lead to renal dysfunction, more often, urinary and fecal incontinence evoke feelings of shame, withdrawal from social interactions, and even social isolation. Our research aimed to shed light on the prevalence of bladder and bowel complaints in Dutch MS-patients and their corresponding referral pathways.

Materials and methods

Results

Patients and disease characteristics

The online questionnaire was filled out by 1,161 partcipants; of them 1,082 consistently completed it. Mean completion time was 18 minutes (range: 7−32 minutes). The average age of the respondents was 53.3 years; they were diagnosed with MS at an average age of 38.3 years. Most respondents were women (81.5%), who were, on average, 3.6 years younger at the time of diagnosis compared to men. RRMS was the most frequent diagnosis (45.5%), followed by SPMS (21.1%), PPMS (19.9%), and mild/benign MS (6.2%). A higher proportion of men was diagnosed with PPMS compared to women (32.8% versus 17.0%), Conversely, RRMS was more frequent in women compared to men (49.5% versus 26.8%). Patients with PPMS and SPMS had the highest PDDS scores (Table 1).

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Table 1. Demographic and disease characteristics.

https://doi.org/10.1371/journal.pone.0310691.t001

The current average age and the age at diagnosis were comparable across disease profiles, except for a lower current age for respondents with RRMS (46.5 years) and a higher age at diagnosis for respondents with PPMS (46.6 years) (Table 2).

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Table 2. Mean current age and mean age at MS-diagnosis per disease stage.

https://doi.org/10.1371/journal.pone.0310691.t002

The average score for the SF-Qualiveen bladder symptom questionnaire was 1.20, and for the NBD bowel symptom questionnaire, it was 5.65.

Respondents who considered bladder or bowel symptoms as one of the top five limitations in their daily lives had higher average scores on both questionnaires. Among them, respondents with PPMS or SPMS recorded the highest scores on both questionnaires (Table 3).

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Table 3. SF-Qualiveen and neurogenic bowel dysfunction total score by disease stage for respondents who considered bladder or bowel complaints as one of the five most significant limitations in their daily life.

https://doi.org/10.1371/journal.pone.0310691.t003

Most respondents reported experiencing some form of bladder symptoms (91%) and bowel symptoms (73%). Among the respondents experiencing bladder and bowel symptoms, 42% and 47%, respectively, were unaware of any potential connection between these symptoms and MS. Bladder symptoms ranked among the top three limitations mentioned in the daily lives of respondents, with 45.3% reporting it alongside fatigue (67.2%), and a decline in cognitive abilities (42.1%) (Fig 1). A minority, but more than a quarter (27.9%) of respondents, identified bowel symptoms as a limitation in their daily lives.

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Fig 1. Limiting factors in daily life in MS patients.

https://doi.org/10.1371/journal.pone.0310691.g001

Bladder and bowel symptoms were more of a limitation for men compared to women with 52.0% of men and 43.9% of women reporting limitations due to bladder symptoms, and 36.4% of men and 26.1% of women experiencing limitations from bowel symptoms. This trend extended to limitations in sexual activities (31.3% versus 9.4%) and, to a lesser extent, mobility, muscle weakness, muscle stiffness, and hand function. Women identified sleep (20.8% versus 10.1%) and mood (10.4% versus 6.1%) as particularly significant limiting factors, and to a lesser extent fatigue, decline in cognitive abilities, change of mood, and pain.

Urinary problems were reported less frequently as a limitation by respondents with RRMS (37.6%) compared to respondents with other forms of MS (49.6% to 56.7%). As for bowel problems, there were minimal distinctions reported among the different MS forms (Table 4).

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Table 4. Experiencing bladder and bowel complaints as limiting, by disease stage.

https://doi.org/10.1371/journal.pone.0310691.t004

Consultations for bladder problems

Approximately one-third of respondents (34.2%) sought consultation with a healthcare professional within a year following the onset of bladder problems. A slightly higher percentage (37.5%) waited for over a year before seeking help, while 28.3% had not sought assistance at the time of the survey. Of the respondents 69.9% (n = 756) who discussed their bladder problems with a healthcare professional, 29.8% consulted a general practitioner, 29.0% a neurologist (29.0%), and 19.6% an MS nurse during their first visit (Fig 2A). Subsequent consultations varied (Fig 2B and 2C); for example, those who initially visited a general practitioner subsequently consulted a urologist (40.9%), a neurologist (19.1%), or an MS nurse (15.6%). Only a small number of respondents revisited the general practitioner for second or third consultations. After the first visit to the neurologist and MS nurse, most patients were referred to a urologist (55.7% and 37.2%, respectively). Following a second consultation with a neurologist, most respondents saw a urologist (56.2%) (Fig 2C).

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Fig 2.

Consultations for bladder problems: (A) Percentage of respondents with a 1^st, 2^nd, and 3^rd consultation per healthcare provider. (B) Percentage of respondents with a 2^nd consultation following their 1^st consultation with a neurologist, an MS nurse, and a general practitioner. (C) Percentage of respondents with a 3^rd consultation following their 2^nd consultation with a neurologist, an MS nurse, and a urologist. (D) Percentage of respondents who were not referred after the 1^st or 2^nd consultation per healthcare provider.

https://doi.org/10.1371/journal.pone.0310691.g002

Consultations for bowel problems

Among respondents, 26.2% consulted a healthcare professional within a year after the onset of bowel problems, while 30.3% waited more than 1 year, and 43.3% had not sought help regarding this issue. Respondents who wanted to address their bowel problems (n = 620) primarily consulted a general practitioner (38.7%) but also sought consultation from either a neurologist (17.1%) or an MS nurse (15.8%) (Fig 3A). Subsequent consultations involved multiple healthcare professionals. After the initial visit to the general practitioner, 25.8% of the patients saw a gastroenterologist, 16.3% consulted a neurologist, and 12.5% met with an MS nurse. Following the first consultation with an MS nurse, patients mainly consulted a neurologist (30.6%), and after the neurologist, they saw a gastroenterologist and an MS nurse (both 18.9%).

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Fig 3.

Consultations for bowel problems: (A) Percentage of respondents with a 1^st, 2^nd, and 3^rd consultation per healthcare provider. (B) Percentage of respondents with a 2^nd consultation following their 1^st consultation with a neurologist, an MS nurse, and a general practitioner. (C) Percentage of respondents with a 3^rd consultation following their 2^nd consultation with the a neurologist, an MS nurse, and a gastroenterologist. (D) Percentage of respondents who were not referred after the 1^st or 2^nd consultation per healthcare provider.

https://doi.org/10.1371/journal.pone.0310691.g003

Discussion

There is currently no published data from Dutch surveys documenting the prevalence of bladder and bowel problems among MS-patients. However, in clinical practice, these problems are frequently observed, as evidenced by our research findings (bladder issues: 91%; bowel issues: 73%). Drawing on international research, it is estimated that 87.6% of MS-patients experience bladder problems [11], while 39–75% experience bowel problems [7]. In a study in the US, 47% of patients with MS reported a significant impact of bladder problems in their daily life, while 28% experienced bowel problems [12].

A study with 1,100 MS patients showed that 14% had moderate to severe bowel dysfunctions (NBD score >10) [13], which is slightly lower compared to the 20% observed in our study.

Interestingly, a substantial proportion of the respondents were unaware that bladder (40%) and bowel (42%) problems could be related to their condition. When bladder problems are recognized as MS-related, they can be treated in accordance with the European [14] or US [15] Guideline for Neurogenic Bladder. Unfortunately, there are no international guidelines for the management of bowel problems associated with MS. It is worth noting that in the Netherlands, there are specialized centers with localized treatment protocols for managing these issues.

Our study demonstrates that patients frequently seek the input of various healthcare professionals for their concerns before finding satisfactory solutions. In the case of bladder problems, most patients ultimately consult a urologist, albeit often following a convoluted route. Our current study indicates that the time between diagnosis and treatment is often long and may not consistently lead to patient satisfaction. The fact that half of the respondents express satisfaction with the eventual treatment of their bladder problems and only a third are content with the time between the initial problems and the eventual solution suggests that the treatment pathway is not optimal.

In the case of bowel problems, patients often consult a gastroenterologist or MS nurse only after multiple referrals. This is consistent with the findings of Woodward et al [16] who concluded that variation in service provision depended on the knowledge and attitudes of HCPs, making referral pathways challenging.

In this regard, the treatment of bowel problems appears to be inadequate. Half of the respondents rate bowel management as 5 out of 10 or lower, and only 40% are satisfied with the eventual solution.

As shown by our study, most patients with MS initially consult their general practitioner regarding their bladder and/or bowel complaints. Given the size of the Dutch population, every general practitioner will, on average, have 2 to 3 MS-patients in their practice. With this in mind, it is strongly recommended that general practitioners recognize the potential connection between these complaints and MS and refer patients to a healthcare professional with expertise in further diagnosing and treating these issues. In the case of bladder problems, we recommend referring patients to a urologist, and for bowel problems, directing them to specialized MS clinics or rehabilitation centers. It is important to recognize that bladder or bowel complaints may be initial symptoms of MS. Since many of these individuals initially present with these complaints to their general practitioner, it is crucial for general practitioners to be aware of the possible neurological origin of these complaints.

A substantial proportion of patients consult the MS nurse for their bladder and bowel complaints. Given their central role in the care of patients with MS, the MS nurse could play a pivotal role in this regard by increasing patient awareness about these MS-related complaints. Many patients tend to delay seeking help for these problems. Conducting a systematic assessment of bladder and bowel issues and having the MS nurse provide more precise referrals to the appropriate healthcare provider could improve this situation.

A strength of this survey is the participation of a substantial group of patients, exceeding 1,000 individuals, who completed the questionnaire in full. This suggests that the distribution networks used to conduct this survey reached a substantial number of MS-patients in the Netherlands (estimated 34,000).

However, it is important to acknowledge the possibility of selection bias, as an online survey will not reach all patients with MS in the Netherlands. Lack of digital literacy means that various patient groups may not have participated, a scenario that could have been addressed with a traditional written questionnaire. To mitigate this, we strategically employed diverse channels for survey distribution, including patient funds, patient associations, and industry, with the aim of reducing the impact of selection bias. Another potential concern is recall bias, especially when the number of respondents is relatively small. However, the respondents’ characteristics in this survey align with the literature, particularly in the context of the management of bladder and bowel issues. Additionally, the large survey sample helps to minimize the risk of recall bias.

Conclusion

The limited awareness among MS-patients of the connection between bladder and bowel issues and their condition hinders accurate recognition, both by the patients themselves and by healthcare professionals. The treatment path for these MS-related complaints is poorly defined, particularly in the case of bowel issues. As a consequence, patients turn to a range of healthcare professionals, resulting in less-than-optimal management of their bladder and bowel problems. Further research is imperative to develop an optimal treatment strategy for these problems in MS. Equally important is the education of healthcare professionals to enhance their ability to offer better support to patients with MS and bladder or bowel problems.

Acknowledgments

We would like to express our gratitude to all the respondents for their participation in the study. We also extend our thanks to MarketResponse, MS Association Netherlands, the National MS Foundation in the Netherlands, and Coloplast Netherlands BV for their contributions to the research. Additionally, we acknowledge and are thankful for the editorial support provided by T4C, Hilversum, The Netherlands, in the preparation of this publication.