Practice Points
- Qualitative findings highlight gaps in patient education, access to evidence-based interventions, and understanding of the experiences of people with multiple sclerosis (MS) and bladder and bowel dysfunction across cultures and health care systems.
- MS clinicians should routinely initiate discussions around bladder and bowel symptoms as a part of clinical assessment and management.
- Urgent research is needed to develop educational resources and improve access to evidence-based interventions for people with MS and bladder and bowel dysfunction.
Multiple sclerosis (MS) is an autoimmune disease of the central nervous system that affects up to 2.8 million people worldwide and impacts at least twice as many women as men.1 MS can cause many symptoms, but bladder and bowel dysfunction is particularly common. Compared with the general population, people with MS have a 4-fold increased risk of bladder dysfunction and a 2-fold increased risk of bowel dysfunction, partly due to disrupted communication between the nervous system, muscles, and somatic organs (ie, bladder, gastrointestinal tract).2-4 Within the first 10 years after diagnosis, up to 80% of people with MS experience bladder dysfunction, and up to 50% experience bowel dysfunction.
For people with MS, bladder and bowel dysfunction can present with symptoms such as urinary incontinence, nocturia (voiding overnight), constipation, and fecal incontinence.5,6 The prevalence of these symptoms increases over time, influenced by factors such as age, hormonal changes, disease progression, and disease relapses.7 In addition, the systems regulating bladder and bowel function are anatomically close and share many neural pathways, making the concurrence of both bladder and bowel dysfunction symptoms common.8
Importantly, both bladder and bowel dysfunction can disrupt daily life for people with MS.5,8 When quantitatively measured, bladder and bowel dysfunction is associated with physical impacts, such as moisture sores, urinary tract infections, increased fall risk, mobility impairments, and decreased quality of life (QOL).2,9,10 In findings from a survey study of 7720 people with MS, over 90% reported distress from bladder and bowel symptoms.9 This distress may stem from quantitatively established physical impacts of bladder and bowel dysfunction. However, it may also include emotional and social impacts, which are often difficult to quantify and can be better explored through qualitative lived experiences.11
In order to manage bladder and bowel symptoms in people with MS, a multidisciplinary approach is often needed from clinicians, including neurologists, urologists, gastroenterologists, continence nurses, and pelvic floor physical therapists.8,12 Findings from quantitative studies highlight low referral rates and lack of clinician initiation as key barriers to bladder and bowel care for people with MS.9,12,13 However, environmental and personal factors (eg, social support, cultural beliefs, sex) may also play a role in limiting care.12 These environmental and personal factors are often nuanced and difficult to fully capture in quantitative studies, making them better understood qualitatively by exploring the lived experiences of people with MS and their care teams.14
Primary qualitative studies are an important tool for understanding unique perspectives in the context of an individual’s experiences.14,15 Qualitative meta-syntheses are a valid methodological approach to compare, examine, and synthesize these experiences, bringing a deeper knowledge than can be gained from individual studies.15-17 The purpose of this qualitative meta-synthesis was to answer this question: What are the lived experiences of bladder and bowel dysfunction for people with MS and their providers?
Methods
Design
To guide this meta-synthesis, a 7-step framework from Noblit and Hare17 was used: (1) constructing a research question; (2) executing a comprehensive search strategy to identify relevant articles (guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analysis)18; (3) reading, extracting characteristics, and performing a quality appraisal of included studies; (4) determining how the studies are related; (5) translating the studies into one another (reciprocal translation); (6) synthesizing reciprocal translations; and (7) summarizing all collective findings.
Data Sources and Searches
Guided by the research question and assisted by a medical librarian, a comprehensive literature search was designed to examine bladder and bowel dysfunction in people with MS. The search (Table S1; all supplemental materials are available in a PDF at the end of the online article) was built in Ovid MEDLINE and then translated to Embase and the Cumulative Index to Nursing and Allied Health Literature to include peer-reviewed articles published in English between January 2000 and February 2025. This 25-year search parameter was selected to ensure inclusion of a wide range of perspectives, due to the potential for limited literature in this area. Relevant publications were identified by searching in these 3 databases using standardized index terms, Medical Subject Headings phrases, and keywords. In addition, reference lists of relevant articles were handsearched for any studies missed by the initial search. Results were exported and uploaded to Covidence19 review software, which was used to remove duplicates.
Study Selection
Study screening and selection were done by the first (L.V.V.) and second (S.P-M) authors in 2 stages. Both authors are pelvic health physical therapists, and L.V.V. is a researcher with qualitative methods training. Identified titles and abstracts were screened for eligibility with the following inclusion criteria: used primary qualitative or mixed-methods design, involved people with MS with bladder/bowel dysfunction or their clinicians, and reported and analyzed qualitative results for people with MS. Mixed-methods studies were included if the qualitative data could be independently extracted for analysis. Articles that focused on the use of catheters or urinary tract infections were excluded, as they indicate more advanced or complex bladder symptoms that can require different management strategies. If a study had no obvious exclusions, it was advanced to the second screening stage, full-text review, and reviewed with the same inclusion criteria. During the screening stages, any discrepancies between reviewers were resolved through a full-author team discussion to achieve consensus on inclusion.
Data Extraction and Quality Appraisal
The first (L.V.V.) and second (S.P-M) authors independently reviewed all included studies, documenting each study’s author details, publication year, country of origin, aim(s), design, participants, methods, and main findings. Any conflicts during the extraction process were addressed through team discussion, with the senior author (M.M.M.) casting the tiebreaking vote. During this process, included articles were appraised by L.V.V. Quality appraisals were guided by the McMaster University Guidelines Critical Review Form for Qualitative Studies, a widely used tool to assess the rigor of qualitative studies, which includes 24 methodological standards rated on an ordinal scale: yes, no, or not addressed.20 In line with the absence of established exclusion criteria based on methodological standards, no studies were excluded from the review based on the quality appraisal results.16
Reciprocal Translation
A reciprocal translation analysis was used to synthesize the qualitative data from all included studies. Reciprocal translation is commonly used within qualitative meta-synthesis methodology and includes an interpretation of the primary study’s findings through the synthesis of new themes and subthemes.21,22 Reciprocal translation includes inductive coding of primary study themes with pattern synthesis until final code definitions are reached. Preliminary inductive code analysis was completed by the first author (L.V.V.). Analytical decisions were guided by the consistency of findings across primary studies and by the extent to which themes and subthemes represented the experiences of people living with MS and bladder and bowel dysfunction, as well as their clinicians. The primary themes and subthemes were organized into a chart to recognize patterns, similarities, and differences across the studies. These patterns were then synthesized to develop new themes.23 Audit, memo trails were maintained during all phases of data analysis to document author bias and decision-making conflicts. Finally, for methodological rigor of final thematic findings, an interdisciplinary team contributed to discussions with the first author to achieve consensus for the final themes (L.V.V., S.P-M, V.J.B., H.C., M.M.M.).15
Results
Search Outcomes
The search produced a total of 3664 articles across the 3 databases. The Figure shows the article selection process and results. After removing duplicates, 3127 abstracts were screened for inclusion, 66 studies were moved to the full-text review, and 14 were identified for inclusion in this qualitative meta-synthesis.
Characteristics of Included Studies
Table 1 summarizes the characteristics of the 14 included articles. Most of the studies were conducted in the United Kingdom (n = 11),10,11,24-32 with 1 study in Iran33 and 2 in Australia.34,35 Four of the studies used a mixed-methods design,10,25,27,32 and 10 were exclusively qualitative.11,24,26,28-31,33-35 The qualitative data from these 14 studies represented a total of 211 people with MS and 44 health care professionals (HCPs).
Quality Appraisal
Using the McMaster tool for appraisal, the 14 articles had varying levels of qualitative methodological rigor. The appraisal results for each study can be found in Table 2. Universal to all 14 studies was a clear description of existing literature, statements of study purpose and design, and findings consistent with presented data. The greatest weakness across all articles was a lack of discussion around theoretical perspectives, researcher bias, and the transferability of analysis procedures. Only 3 studies provided a description of potential author assumptions and biases.11,26,31
Reciprocal Translation Findings
From the reciprocal translation, 3 key themes and 3 subthemes were identified: (1) QOL impacts, (2) barriers to accessing health care (subthemes: clinician-driven access barriers, patient-driven access barriers, opportunities for facilitating access to bladder/bowel health care), and (3) symptom management strategies. Primary studies were connected to these 3 themes using reciprocal translation. Theme definitions and additional representative quotes can be found in Table S2.
Theme 1: QOL Impacts
Within the theme of QOL impacts, people with MS discussed the impacts that bladder and bowel dysfunction had on their daily routine and social life. One revealed, “But if I am feeling terrible, there [have] been times, maybe my fiancé and I have got dressed up to go out, and [I’m] just feeling, look, I can’t do this. I can’t unless I go to the loo. And it takes over your life a bit. Any restaurant or bar or pub, anything like that, always the first thing I do is, ‘Where is the loo?’, and it becomes an obsession with your life.”30 Another stated, “I feel stressed if I’m out, so I tend not to leave the house much. I no longer see my friends, because I’m worried in case I have a leak.”25
QOL impacts also encompassed the shame and embarrassment that bladder and bowel symptoms can cause. People with MS described an underlying anxiety about trying not to disclose bladder and bowel symptoms: “It’s just so depressing [speaking about symptoms that have affected…bladder function] and…not the person that I normally am. It’s like there’s 2 sides to myself.”31 Another commented on the embarrassment of displaying symptoms that are out of their control: “The embarrassment that comes with, with…when you soil yourself. Even everything within the family was getting embarrassing; even though [my wife] didn’t mean anything by it, it embarrassed her.”28
Theme 2: Barriers to Accessing Health Care
For people with MS, accessing bladder and bowel health care is a variable experience that greatly impacts both QOL and symptom management. This theme encompasses barriers that prevent successful use of bladder and bowel health care. The subthemes included clinician-driven access barriers,
patient-driven access barriers, and opportunities for facilitating access to bladder/bowel health care.
Subtheme 1: Provider-Driven Access Barriers. Clinician-driven access barriers to bladder and bowel health care for people with MS include not asking about symptoms and a lack of bladder and bowel expertise. Providers in this meta-synthesis described a lack of comfort with initiating sensitive conversations with their patients: “I think it’s a mix of knowledge that maybe the doctor doesn’t know that the service is available…[and] the patient is reluctant to admit the problem. I also think that doctors are reluctant to ask and really give the patient time.”29
People with MS across these studies also described experiences with HCPs who lacked the expertise to speak about bladder and bowel management. This perception was not unique to a health care specialty and included general practitioners, neurologists, and physical therapists. One participant stated, “I’ve never received any written information about neurogenic bladder and bowel from anyone…. [S]upport from the GP [general practitioner]…would have been helpful.”25 Another reported a lack of understanding from physical therapists: “I’ve never seen a physiotherapist about [my] pelvic floor. They’re really interested in your balance or your walking. No physio has ever mentioned [my] bladder.”31
Subtheme 2: Patient-Driven Access Barriers. People with MS across these studies also identified a variety of patient-driven access barriers to bladder and bowel health care. Embarrassment was a common reason to avoid conversations, especially if the HCP did not initiate the conversation. One female patient said, “Well, you don’t really want to talk about going to the loo to somebody. But when you talk about something that is intimate like that, it is difficult, very difficult, especially if the doctor is a man.”30
Other people with MS expressed frustration around not understanding normal bladder and bowel function. For instance, a patient discussed voiding overnight: “You think it’s not just me then, everybody seems to be getting up in the middle of the night.”32 In addition, people with MS had a tendency for delayed reporting because they did not think help was available. When discussing bladder dysfunction treatment options, one stated, “It is not a problem that can be fixed by surgery; it can’t. So there is nothing I can do.”11 Another discussed the scarcity of education around treatment options, stating, “[Service provision] is quite lacking at the moment. It is quite lacking, yeah. The information isn’t there.”11
Subtheme 3: Opportunities for Facilitating Access to Bladder/Bowel Health Care. People with MS and their HCPs identified opportunities for improving access to bladder and bowel health care. People with MS highlighted the need for persistent self-advocacy within the system to work toward positive changes. One patient drew a parallel to a fatigue specialist, who, like bladder and bowel specialists, may not be well-known or utilized: “I think most of my friends with MS’ attitude is that you have to be a bit pushy. Someone was saying, ‘I finally got to speak to a fatigue specialist,’ and everyone was like, ‘I didn’t even know that was a thing.’”31
HCPs emphasized the need for standardized guidelines so that they can be more confident when developing and communicating a bladder and bowel plan of care. They also identified the importance of strong communication pathways between themselves and patients to ensure that people with MS feel heard during sensitive conversations. One HCP stated, “It would be really fantastic if there was a pathway [for]…bowel care for an MS patient, because then that would be consistency…. [E]ven though we’re based in the hospital, it would be nice for our colleagues in the community or for MS nurses to also follow the pathway because that is what we really need.”24
Theme 3: Symptom Management Strategies
The theme of symptom management strategies represents how people with MS take responsibility for self-driven symptom management, often without the support of HCPs. A common strategy included staying close to a toilet due to fear of having an accident. One patient described an outcome of this increased focus: “You’re focusing too much about it and worrying about it, that in turn makes you want to go to the toilet again just in case to be safe.”11
People with MS also described the pressure they feel to use self-management strategies to stay in control of their symptoms: “When you go out…I mentally organize myself. I am reluctant to accept an invitation if it is going to be difficult that way. I make a list of how I am going to get to the toilet.”34 Other methods used to maintain control were monitoring the location of the nearest toilet, carrying extra pads and clothes, and manual self-evacuation of the bowels.11,27-32 They also commented on how the severity of the symptoms could impact the ability to use self-management strategies: “On a good day, I could go to work but I had to make a number of key adjustments to different parts of my life: I had to change my pad every hour, and by now these were very bulky pads. I had to wear black jeans or trousers. I had to carry a set of spare clothes in the car at all times. I was in a perpetual state of worry.”25
Discussion
This qualitative meta-synthesis presents a novel analysis examining the lived experiences of people with MS and their HCPs in the context of bladder and bowel dysfunction. The meta-synthesis identified 3 themes: QOL impacts, barriers to accessing health care (subthemes: clinician-driven access barriers, patient-driven access barriers, opportunities for facilitating access to bladder/bowel health care), and symptom management strategies. Overall, these findings suggest key gaps in patient education tools, access to evidence-based interventions, and understanding the perspectives of people with MS and bladder and bowel dysfunction across different health care systems.
Bladder and bowel dysfunction in people with MS is qualitatively linked to decreased QOL and reduced physical and social participation.11,25,27,28,30,31,33-35 This is largely due to fear of being away from a toilet.11,27,29,32 People with MS throughout this meta-synthesis described bladder and bowel dysfunction as a barrier to participating in daily social activities. In addition to worse QOL, bladder dysfunction for people with MS has been associated with increased mental health challenges, including depression and anxiety.36-38 The decreased ability to participate in social and community activities, as a consequence of bladder and bowel symptoms, may exacerbate these mental health concerns, further impacting overall participation and QOL.
This meta-synthesis suggests that bladder and bowel symptoms alter the daily routine of people with MS,11,27,28,30-32,34,35 which also negatively impacts QOL. Although bladder and bowel dysfunction was not explicitly stated as a barrier to exercise in this meta-synthesis, it is known that people with MS have worse physical activity behavior and QOL when compared with individuals of a similar age without MS.39 Although a theme around exercise did not develop in this meta-synthesis, one patient stated, “I try to go to the toilet early in the day so that I can go out and be fairly safe that I won’t have any disasters. I do not stray far from a toilet, so although I love the country, I rarely go there to walk as I used to.”10 Given the abundance of quotes in this analysis regarding staying close to a bathroom, it is possible that bladder and bowel symptoms are contributing to less activity or exercise for people with MS.39 Additionally, among older adults, symptoms of overactive bladder, urinary urgency, and nocturia have been associated with more sedentary time, and people with MS with increased bladder and bowel dysfunction have worse mobility.40,41 Future research could explore the relationships between bladder and bowel dysfunction, physical activity, and sedentary time and the impact they may have on QOL for people with MS.
People with MS have diverse experiences with accessing bladder and bowel health care, but a common finding in this review was that HCPs rarely initiated sensitive conversations around bladder and bowel symptoms.11,24,25,30,31 These clinician-driven access barriers correspond to findings from a quantitative survey, which identified lack of clinician inquiry as a key barrier to bladder health care for people with MS. There are also significant gaps in quantitative data related to the treatment of neurogenic bladder and bowel, which may further decrease HCP confidence in asking about bladder and bowel symptoms.42 Together, these findings suggest that limited clinician training and time may influence patients to perceive their symptoms as not important enough to discuss.24,26,30 MS HCPs should proactively initiate discussions around bladder and bowel symptoms as a routine part of clinical assessment and management.
Women with MS in this meta-synthesis reported the male sex of their provider as a barrier to discussing bladder and bowel symptoms.11,30,31,34 Findings from qualitative studies have previously reported that female patients with overactive bladder feel more embarrassment and reluctance discussing their symptoms with male providers.43 Similarly, a study on sex preferences when selecting a urologist found that both men and women felt more comfortable talking to providers of the same sex, citing a better understanding of their bodies.44 For people with MS, patient preferences regarding HCP sex may help facilitate conversations about bladder and bowel symptoms as well as other sensitive issues. However, in both the United Kingdom and the United States, only approximately 31% of neurologists are female, whereas approximately 75% of people living with MS are female.1,45,46 This mismatch could be a major barrier to facilitating conversations about sensitive topics such as bladder and bowel management. Future studies should investigate the impacts of clinician sex on patient disclosure of symptoms, provider-patient communication, and health outcomes among people with MS and bladder and bowel dysfunction.
In addition to limited education about symptoms, people with MS in this meta-synthesis showed a lack of awareness regarding what constitutes normal bladder and bowel function,11,27,31,32 which may reduce the likelihood of people with MS discussing this topic with HCPs. For example, one patient interpreted overnight urgency as a normal part of aging but did not recognize it as a potential symptom of MS-related bladder dysfunction.32 In the general population, even women with high health literacy have less understanding of bladder/pelvic function than other parts of the body and therefore seek care less often for bladder conditions.47 Less conversation about bladder and bowel symptoms may indicate less bladder and bowel education for people with MS, compounding the impact of decreased health literacy around these symptoms. Clinically, within MS health care, there is a need for an educational tool and specialized training to help clinicians initiate sensitive conversations and improve early bladder and bowel patient education.
Both patients and HCP participants in this meta-synthesis demonstrated a lack of awareness of interventions for bladder and bowel dysfunction,10,11,29,31 including pelvic floor physical therapy. Pelvic floor physical therapists are specialized experts in bladder and bowel symptom management who can provide evidence-based intervention options, including pelvic floor muscle training, biofeedback, tibial nerve and abdominal electrical stimulation, and abdominal massage.48-52 These interventions have been shown to help people with MS manage bladder and bowel dysfunction and improve QOL.49,53 In results from a survey study of women with urinary incontinence, it was reported that women who had doubts about the effectiveness of pelvic floor physical therapy were less likely to use available care.54 People with MS in this meta-synthesis also reported experiences with physical therapy that focused heavily on mobility and balance without addressing bladder and bowel symptoms,31 further suggesting a lack of referrals between physical therapy specialties. Physical therapists who regularly work with people with MS should be aware of the high prevalence of bladder and bowel dysfunction and understand when a referral to a pelvic floor physical therapist is appropriate. However, pelvic floor physical therapy remains underutilized in both the general population and among people with MS with bladder and bowel dysfunction, largely due to limited provider availability and a lack of referrals.13,55-57 The underutilization of pelvic floor physical therapy highlights the potential need for less specialized interventions (ie, hip strengthening and patient education tools)58-60 that all physical therapists could incorporate to address bladder and bowel dysfunction for people with MS.
The studies included in this meta-synthesis came from countries with differing health care systems and cultures. Notably, none of the studies were conducted in the United States, where more than 1 million people are affected by MS.1 Differing social and cultural factors, often driven by embarrassment and stigma, are significant barriers to bladder and bowel symptom management, especially in relation to women’s health.61 People with MS in this meta-synthesis frequently relied on self-driven symptom management strategies to maintain daily control over their bladder and bowel symptoms and limit the embarrassment of sharing these symptoms with others, including clinicians.10,11,28,31 Future research should explore the experiences of people with MS with bladder and bowel dysfunction in different cultures, including the United States.
Despite attention to rigor and reflexivity, there are several limitations to this review. First, the process of conducting a meta-synthesis includes codifying common themes and subthemes. This summative nature means the important nuance of an individual’s reported experiences may be overlooked. Second, though an interprofessional team was used throughout data analysis, study screening and extraction were performed by 2 pelvic floor physical therapists. This similarity in viewpoints may have increased the risk of researcher bias. Third, the articles included in the review were predominately from the UK, limiting the transferability of the results to all health systems. Conclusions should be made with caution when being applied to different countries, cultures, and health care systems.
Conclusions
This meta-synthesis identified barriers to health care access, QOL impacts, and self-management strategies related to bladder and bowel dysfunction in people with MS. Findings highlight limited provider engagement and low awareness of intervention options. Participant embarrassment and stigma also played a role in reducing activity and social participation, largely due to the need to stay close to a toilet. These findings emphasize the urgent need for research to develop educational resources, improve access to evidence-based interventions, and understand the perspectives of people with MS and bladder and bowel dysfunction in differing health care systems.
