Practice Points
- People with multiple sclerosis (MS) who experience bowel dysfunction have a lower quality of life linked to the psychological distress and stigma associated with the disease.
- The private and taboo nature associated with bowel dysfunction restricts patients from talking openly with their health care team.
- Self-management of bowel issues is common among people with MS.
- There is a significantly higher risk of poor well-being in people with MS who are dissatisfied with their bowel function and in those who self-manage bowel care.
Multiple sclerosis (MS) is a neurodegenerative disease characterized by immune-mediated attacks on the nervous system, leading to a wide range of neurological dysfunctions.1 Symptoms manifest interchangeably and at varying degrees as visible symptoms, including mobility dysfunctions and spasticity, and invisible symptoms, such as pain, fatigue, depression, cognitive impairments, and bladder and bowel dysfunction.2,3 The onset of MS and its symptoms varies, often beginning with sporadic and subtle symptoms that may seem minor and relatively general at first, leading to life adaptation, which can delay diagnosis.4,5
Neurogenic bowel dysfunction (NBD), which many people with MS experience,6,7 is underpinned by a complex interplay between hindgut sensorimotor neuropathy and altered transit through the gastrointestinal tract and rectum.7,8 Key symptoms of NBD are constipation and fecal incontinence (FI).7,8 Constipation often predates MS diagnosis, 3.7 years on average, and may be one of the first experienced symptoms of MS that prompts individuals to seek medical attention.9-11 However, given the high global prevalence of constipation, which affects approximately 14% of the general population and increases with age,12 MS-related bowel complications may initially be mistaken for more general issues.13,14
The prevalence of bowel complications in the MS population is 3- to 5-fold greater than in the general population, ranging from 39% to 73%.7,15,16 The presence of NBD symptoms is associated with a range of quality-of-life (QOL) impairments affecting social interactions, ability to work, and intimacy, which cumulatively give rise to a high mental burden and isolation.3,6,13,17,18
The private and taboo nature of bowel symptomatology19 also affects patients’ interaction with their health care professionals (HCPs), restricting them from discussing their bowel problems. In particular, FI, which is one of the most debilitating symptoms of NBD, inflicting embarrassment, anxiety, and isolation, receives disproportionally little attention given its disabling scope.13,18,20 Instead, people with MS attempt to self-manage and employ multiple strategies and medications including lifestyle modifications, such as dietary change and manual evacuation, and medications such as laxatives and enemas.13,21 Self-management among people with MS who experience bladder dysfunction has previously been linked to lower well-being.22 Further, results from a large international survey found a negative correlation between constipation and QOL and that the impact on QOL was comparable to other disease states.23
MS-related bowel issues remain poorly recognized by many HCPs, resulting in undermanagement and low treatment satisfaction.24-26 Increasing awareness of MS symptoms will enhance support and improve QOL for people with MS. The aim of the study is to understand the association between patient-reported bowel function satisfaction and mental well-being in people with MS.
Methods
Study Population
Findings from a previous survey identified 1872 people with MS with bladder and bowel symptoms, showing an association between bladder problems and lower well-being.22 A logistic regression analysis demonstrated that people with MS with bowel problems were more likely to have lower well-being compared with those without bowel problems (OR, 1.43; 95% CI, 1.11-1.85). To examine the impact of bowel satisfaction on well-being further, this study extracted individuals with bowel problems from the same population based on the responses “Yes” or “Sometimes” to the question, “Do you consider yourself to experience any bowel problems since your MS diagnosis?”
People with MS were recruited through social media channels, disability organizations, HCPs, and intermittent catheter user databases from Coloplast’s French, German, Italian, and UK subsidiaries and asked to complete an online survey. Information about the survey’s purpose and data anonymity was provided on the survey’s front page.
Of 29,652 initial participants, 25,377 did not start the survey, 2036 dropped out, and 285 were screened out for not having MS, leaving data from 1954 individuals. Further exclusions were 11 individuals younger than 18 years and 71 individuals residing outside France, Germany, Italy, or the UK. Of 1872 eligible individuals with MS who completed the survey in their respective local languages (response rate: 6.3%), 1322 individuals were identified as experiencing bowel problems. These individuals were included in the final study population for analysis (Figure 1). The survey was conducted online from April 2022 to November 2022, and ethical guidelines for anonymized research were followed.
Variables
The survey topics were derived from scientific literature, particularly large MS registries,27 focusing on prevalent issues and symptoms among people with MS, with an emphasis on bladder and bowel dysfunction. Participants provided the following background information.
- Demographics: age, sex (female; male), and employment status (employed; unemployed; or other [parental leave, self-employed, stay-at-home, student, disability/early pension, sick leave, or other employment])
- Disease: MS type (conforming to the UK MS Register: benign MS; relapsing-remitting MS [RRMS]; secondary progressive MS [SPMS]; primary progressive MS [PPMS]; unspecified MS), time since MS diagnosis (0-4 years; 5-10 years; 11-15 years; 15+ years), and mobility (full mobility; not walking [defined as bedridden or in wheelchair]; walking with instability [without assistance but with some balance problems]; or walking with assistance [using a cane, crutches, or a frame])
- Bowel factors: bowel problems (FI [“bowel accidents” in the survey]), other bowel symptoms (eg, constipation, diarrhea, stomach spasms, open bowel ≥ 3 times/day), satisfaction with bowel function (good; poor6,7,28), management of bowel problems (self-managing; HCP), receiving treatment for bowel problems related to MS (yes/under investigation; no), and time when bowel problems started after MS diagnosis (already had them; within the first year; 1-2 years; 3-5 years; 6-10 years; > 10 years; I do not have any bowel problems).
- Urinary factors: retention (yes/no), overactive bladder (OAB; assessed with the validated Actionable Bladder Symptom Screening Tool,29 which includes 8 questions, scored on a 4-point Likert scale, where a score of 0-2 indicates no symptoms or impact of bladder symptoms and a score of 3-8 indicates symptoms or impact of bladder symptoms, corresponding to symptoms of OAB),22 and having 2 or more urinary tract infections (UTIs) in the past year requiring treatment (yes/no).
The primary outcome, general well-being, was assessed using the validated 5-item World Health Organization-Five Well-Being Index (WHO-5).30 This index is a general measure of subjective well-being, scored from 0 (at no time) to 5 (all the time). It evaluates whether individuals have felt cheerful and in good spirits, calm and relaxed, and active and vigorous; whether they woke up feeling fresh and rested; and whether daily life has been filled with things of interest over the past 2 weeks. The raw score ranges from 0 to 25 points, which is then multiplied by 4 to yield a final score between 0 (indicating the worst imaginable well-being) and 100 (indicating the best imaginable well-being). Scores of 50 or below indicate lower well-being, whereas scores above 50 indicate higher well-being.
Statistical Analysis
Descriptive analyses were conducted to characterize the study population. Participants were categorized based on their MS type, and the frequency of their responses to the survey questions was calculated. A logistic regression model was used to explore the relationship between bowel satisfaction and well-being, estimating OR for lower well-being and the corresponding 95% CI. The statistical model included the following covariates: demographic factors, such as sex, age, time since MS diagnosis, employment status, and potential proxies for MS progression, including urinary problems (overactive bladder, urinary retention, and/or urinary tract infections); bowel management; and mobility status. Data analyses were performed using SAS Enterprise Guide version 7.1, applying a 5% significance level in all statistical analyses.
Results
Demographics
Of the 1322 people with MS included, most were women (76%) and the median age was 52 years (IQR, 44-60). Nationality was equally distributed, with a slightly higher participation rate from France (27%; n = 510) and Germany (27%; n = 499). Many had RRMS (44%), followed by SPMS (29%), 13% with PPMS, 11% with unspecified disease, and 3% with benign MS. Forty-five percent of the study population had received their MS diagnosis more than 15 years ago, whereas 22% were diagnosed within the past 4 years and 33% had been diagnosed within 5 to 15 years (Table). Based on the WHO-5 well-being index, 66% (n = 867) had low scores and 34% (n = 455) had high scores.
Bowel Problems and Other MS-Related Issues
FI was reported by 34% of the total population. This symptom was predominantly observed in individuals with RRMS and SPMS, with only 2 cases identified among those with benign MS. Other bowel symptoms were reported by 59% of the total population, also predominantly among people with RRMS and SPMS. Despite the high prevalence of bowel problems, only 37% had received treatment, 51% managed their own bowel issues, and 35% reported low satisfaction with their bowel functions.
At the time of their diagnosis, 30% had been experiencing bowel problems and a high proportion also experienced some bladder dysfunction (urinary retention [46%], OAB [62%], and/or ≥ 2 UTIs in the last year [36%]). The majority reported mobility-related issues (85%), and more than half were either unemployed or in another nonemployed situation.
Well-Being
The association between bowel problems and well-being—adjusted for sex, age, time since MS diagnosis, employment status, bowel management, mobility, and urinary problems—showed a 2 times higher odds of lower well-being for people with MS who reported poor satisfaction with their bowel function (OR, 2.16; 95% CI, 1.64-2.83) and a 38% higher odds of lower
well-being when individuals managed their own bowel care (OR, 1.38; 95% CI, 1.07-1.78; Figure 2).
People diagnosed within the past 10 years were twice as likely to have lower well-being: The OR for those diagnosed within 4 years was 2.14 (95% CI, 1.46-3.15), and for those diagnosed within 5 to 10 years, it was 2.13 (95% CI, 1.46-3.13). In addition, the odds of lower well-being were significantly higher in individuals who had 2 or more UTIs in the last year (OR, 1.65; 95% CI, 1.25-2.18) or those who had OAB (OR, 1.61; 95% CI, 1.23-2.10) compared with those who had 0 or 1 UTI and those without OAB.
Analysis further indicated that employment status had differing impacts on well-being. Compared with being employed, being unemployed was associated with a 54% higher likelihood of lower well-being (OR, 1.54; 95% CI, 1.14-2.07). Conversely, participants choosing other employment (eg, parental leave, self-employed, stay-at-home, student, disability/early pension, and sick leave) were 47% less likely to report lower well-being compared with those who were employed (OR, 0.53; 95% CI, 0.29-0.96). Finally, urinary retention, femaleness, and reduced mobility also showed a higher odds of lower well-being, though results were not statistically significant. The full list of logistic regression results is presented in Figure 2.
Discussion
Key Results
The results of the current study demonstrated a significantly higher likelihood of poor well-being in people with MS who had poor satisfaction with their bowel function and who self-managed those problems. Additional factors affecting well-being included having urinary problems, recent MS diagnosis, and being unemployed.
Bowel Symptoms in the Course of MS
Signs of the prodromal or prediagnostic phase of MS (eg, fatigue, pain, depression, cognitive decline, bladder and bowel dysfunction) are receiving increasing attention.31-34 In the current study population, 30% reported bowel problems at the time of their diagnosis and 14% within the first year (Table) in accordance with the literature.33 This may suggest early involvement of the central or peripheral nervous system and, in coexistence with other known prodromal markers, may prompt further MS examination.11,14,34
The control of bladder and bowel function originates in neurological pathways in close proximity; dysfunction of one system often coexists with dysfunction of another.14 In this study, all participants experienced both bowel and urinary problems and both problems were associated with significant odds for poor
well-being. Further, lack of HCP involvement in bowel management was significantly associated with poor well-being.
Poor satisfaction with bowel function was mainly reported among people with RRMS and SPMS, likely due to a higher occurrence of bowel dysfunction (FI and/or other bowel symptoms) in these subgroups. This is supported by previous evidence showing worse disability, including bowel and bladder dysfunction, in individuals with RRMS and SPMS.10,35,36 In addition, the high proportion of dissatisfaction among patients with unspecified MS (37%) suggests a group of unresolved cases, where the severity of bowel dysfunction may be lower and patients are likely to manage their bowel issues independently.
Supportive Tools for Assessing and Managing Bowel Symptoms
Findings from multiple studies highlight the importance of early HCP involvement in the management of bowel dysfunction among people with MS.6,18,37 The current study reinforces this by demonstrating a strong association between bowel symptoms and reduced well-being, particularly in individuals who attempt to manage these symptoms without clinical guidance. However, patients frequently avoid discussing bowel symptoms with their HCPs due to embarrassment, lack of appropriate terminology, and the difficulty in openly discussing bowel problems due to societal taboos.17,18 Instead, patients manage symptoms independently through diet and over-the-counter remedies, delaying help-seeking and experiencing their condition alone.14,17,19 This may explain the higher odds of poor well-being observed in those who manage their bowel problems independently compared with those receiving help from an HCP. Although self-management is at the heart of neurogenic bowel management, proactive and empathetic communication from HCPs is needed to normalize bowel discussions and reduce stigma prior to instruction on best practice.38,39
Results from a French study found that 56.5% of patients who reported at least 1 bowel symptom experienced some barriers to seeking help, such as an unwillingness to discuss bowel issues with an HCP (20%), a preference for self-management (15%), or not being offered advice by the physician (6%).19 Living with bowel symptoms for more than 5 years was the only significant predictor for help-seeking, and patients who did seek help also experienced worse physical and social functioning and pain.19 Discrepancies between physicians’ and patients’ assessments of bowel issues and a lack of appropriate terminology may also challenge the discussion of bowel dysfunction in the patient-carer relationship. For example, patients with FI may be more concerned with leakage, hygiene, and social embarrassment whereas HCPs may consider the physiological aspects of incontinence more important.40
Previous interviews with people with MS and their caregivers also show that bowel issues are often neglected during HCP interactions, resulting in delayed referral to specialist care, leaving patients and carers to manage bowel issues on their own,18 contrary to expert recommendations.38 Interviews with HCPs from the UK National Health Service (spanning primary to tertiary care) revealed a wish for enhanced education, evidence-based guidelines, and simpler referral processes, along with clearer patient pathways, especially among nurses.37 The absence of supportive tools and guidance to facilitate early discussions about bowel symptoms is a critical gap, especially given the private nature of these issues.37
Although gastroenterologists and bowel specialists typically employ structured assessment tools and prioritize bowel health systematically, MS nurses may hesitate to discuss bowel issues in detail, possibly due to insufficient education on addressing and managing these problems. As a consequence, bowel issues are often less prioritized compared with bladder issues, resulting in diverse referral patterns.37 However, nurses and general practitioners play a pivotal role in this process, and the development of supportive tools (eg, structured questionnaires or a checklist of relevant symptoms) could facilitate dialogue and improve early identification and management of bowel dysfunction.19 Longitudinal studies can support the exploration of bowel symptoms over time in relation to MS progression and how they impact QOL and psychological well-being. Such research would provide valuable insights into the timing and nature of interventions, which could help tailor support strategies to individual patient needs. Early and sustained engagement by HCPs, supported by evidence-based tools and clear referral pathways, is essential to improve outcomes and reduce the burden of bowel dysfunction.
A surprising finding of this study was the lower odds for poor well-being in the group of those with other employment, which included parental leave, self-employment, staying at home, being a student, disability/early pension, and sick leave. This finding may suggest that some individuals are so troubled by their bowel issues that they must change their work situations to better manage symptoms. This is particularly relevant for individuals where work performance expectations may be unrealistic due to the concurrent challenges inherent in the disease. These findings stress the importance of identifying individuals with bowel dysfunction and ensuring that they receive the support and treatment needed to remain working and ensure some sort of normalcy and independence.20
Strength and Limitations
The current study involved a large number of people with MS across 4 European countries and provides important insights about living with MS across different MS types. Survey topics were identified from a large nationwide MS registry,27,41,42 ensuring relevant topics and adjustment for relevant and potential confounders in the statistical models. Well-being was measured by the psychometrically validated WHO-5, a widely used tool for assessing subjective psychological well-being. It has demonstrated robust psychometric properties across a range of clinical populations, and a cutoff score of 50 or less has been commonly applied to indicate reduced well-being and risk of depression.30 However, although the WHO-5 has been employed in MS-related research, its diagnostic accuracy and optimal cutoff values remain unconfirmed in this context, even though this population is known to experience high rates of depression and psychological distress.43 Given the unique symptom burden and psychosocial challenges associated with MS, further validation of the WHO-5 in this population is warranted.44 Until such data are available, the threshold of 50 or less may be used cautiously as a screening indicator, with the understanding that its sensitivity and specificity in MS populations are not yet established.
Other limitations should be considered. First, the cross-sectional design captures only a single time point, limiting the ability to infer causality and potentially confounding patient-reported outcomes (PROs). Second, the use of an online questionnaire may have introduced selection bias, as individuals with more severe disease may be less likely to participate, resulting in a healthy user bias. Third, disease history may have influenced PROs. For example, patients in earlier disease stages, typically characterized by widespread neuronal inflammation and heightened symptom awareness, may report differently than those with longer disease duration, who may have adapted to their symptoms.41 In addition, the 151 people with unspecified MS may have been under evaluation or unaware of their diagnosis, further contributing to uncertainty in interpreting PROs. Although results from this survey provide important insights into the lived experience of bowel dysfunction in people with MS, longitudinal studies using validated bowel function assessment tools are needed to strengthen the validity and generalizability of the findings.
Conclusions
People with MS are affected by an array of symptoms that affect their QOL and well-being. Previous findings have demonstrated the effects of living with bladder dysfunction and the unmet needs of proper treatment and management to support the lives of people with MS. However, bowel and bladder dysfunctions often coexist. The social stigma associated with bowel problems usually results in the problem being undertreated, and individuals are left to manage their bowel dysfunction on their own, with a significant impact on their well-being. Findings from this study emphasize the significance of early HCP involvement to prevent deterioration in mental health.
