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New/Enlarging T2 Lesions in a Progressive Multiple Sclerosis Trial Cohort: Computer vs Human Detection

Telemedicine has expanded access to high-quality, appropriate, and affordable health care for people with multiple sclerosis (MS). This study explored how the expansion of MS telemedicine is perceived and experienced by people with MS, health care providers (HCPs), and payers and policy experts (PYs).

Forty-five semistructured interviews with 20 individuals with MS, 15 HCPs, and 10 PYs were conducted between September 2020 and January 2021. The interviews were recorded on a televideo platform, transcribed, and analyzed for themes using qualitative data software.

Interviews revealed the following 4 themes. 

: Telemedicine increases access and convenience. Technical challenges were the most cited downside to telemedicine. 

: Confidence in MS care via telemedicine varies. Virtual “house calls” have clinical benefits. 

: Reimbursement parity is critical to utilization and expansion of telemedicine. Stakeholders are hopeful and fearful as infrastructure and business models begin to shift. 

: The familiar structure of the office visit is currently absent in telemedicine. Telemedicine visits need more intentionality from both providers and patients.

Telemedicine is an efficient, convenient way to deliver and receive many aspects of MS care. To expand telemedicine care, many HCPs need more training and experience, people with MS need guidance to optimize their care, and PYs in the United States need to pass legislation and adjust business models to incorporate benefits and reimbursement for telemedicine health in insurance plans. The future is promising for the ongoing use of telemedicine to improve MS care, and stakeholders should work to preserve and expand the policy changes made during the COVID-19 pandemic.

From The Department of Sociology, Anthropology, & Public Health, University of Maryland Baltimore County (UMBC), Baltimore, MD, USA (EGR); Department of Veterans Affairs Multiple Sclerosis Center of Excellence, Washington, DC, USA (HWM, MTW); Gryphon Scientific, Takoma Park, MD, USA (SLM); Capitol Heights, MD, USA (ZJM); and George Washington University School of Medicine, Washington, DC, USA (MTW). 

Erin G. Roth, PhD, UMBC, Public Policy Building, 1000 Hilltop Cir, Baltimore, MD 21250, USA; 

We thank Hollie Schmidt of iConquerMS for recruitment assistance and Dr C. Daniel Mullins of The PATIENTS Program and chair of the Pharmaceutical Health Services Research Department at University of Maryland Baltimore, School of Pharmacy, for his counsel and support.

 The authors declare no conflicts of interest.

 This work was supported by a grant awarded to Dr Wallin by the National Multiple Sclerosis Society (HC-1610-25978) and the US Department of Veterans Affairs Multiple Sclerosis Centers of Excellence.

Multiple sclerosis (MS) affects more than 2.8 million people worldwide

 and is the most common neurodegenerative disease in young adults. It can produce a variety of neurologic deficits that impair mobility, making it difficult for people with MS to access health care. Additional barriers to accessing care include distance from health care providers (HCPs); costs of services, medication, and transportation; and inadequate health insurance coverage and reimbursement.

 A 2007 study found that, in the United States, at least 31% of people with MS were unable to access the specialists their physician recommended they see.

 We anticipate that with the advent of high-speed internet, inexpensive cameras, and monitoring software, telemedicine will continue to fill some of these gaps in care access for people with MS.

In early 2020, the COVID-19 pandemic produced multiple challenges for health systems throughout the world.

 Among them was the provision of specialty care for patients with chronic conditions such as MS.

 To prevent the spread of COVID-19, face-to-face visits were either deferred or converted to telemedicine visits within weeks.

 This dramatic shift in care forced both providers and people with MS to learn new ways to communicate. Private health care insurance programs followed the lead of Medicare to cover and fully reimburse telemedicine visits and to relax security requirements for patient-provider communication and within-state licensing and liability requirements for HCPs.

 The aim of this study was to explore the perspectives of people with MS, HCPs, and payers and policy experts (PYs) on the use of telemedicine for the provision of MS care.

Qualitative research methods have been effectively used to explore telemedicine practice and processes from diverse perspectives.

 We conducted semistructured interviews between September 2020 and January 2021 to explore telemedicine practice and experiences among people with MS, HCPs, and PYs.

 Approval for this study was granted by the institutional review board of the Department of Veterans Affairs (VA) Medical Center-Washington, DC.

People with MS were purposefully selected and stratified by race and ethnicity, sex, US census region, and disability (Expanded Disability Status Scale scores)

 to generally reflect the US MS population.

 We recruited from 2 sources: (1) iConquerMS community members living in the United States who participated in an online survey of telemedicine

 and were interested in being interviewed (n = 264) and (2) patients from Veterans Health Administration’s MS Center for Excellence-East who had used telemedicine in the past 6 months (n = 66). Inclusion criteria consisted of MS diagnosis, age 18 years or older, and internet access. iConquerMS sent recruitment emails to eligible community members in 2 small batches until the quota targets were met. Twenty-seven individuals received the recruitment email, and of these, 13 were interviewed. Patients from the MS Center for Excellence-East were selected to reach the target number of males and people who are Hispanic and Black.

The HCPs were recruited from a spectrum of disciplines that assess and provide care for people with MS, including mental health providers, neurologists, nurse practitioners, and rehabilitation specialists. We used the Consortium of Multiple Sclerosis Centers’ (CMSC) clinical program list to identify a diverse group of providers with a range of years in practice, telemedicine experience, and practice settings (academic, private, government).

The PYs were recruited from private health insurance companies in the mid-Atlantic region, Medicare and Medicaid, VA telemedicine and information technology staff, and telemedicine trade associations.

To elicit accounts of participants’ experiences with telemedicine, we conducted 40- to 60-minute semistructured interviews via Zoom (Zoom Video Communications, Inc). Except for 1 group interview with 4 people with MS from the VA, all other participants were interviewed individually. Both people with MS (interviewed by a qualitative researcher) and HCPs (interviewed by researcher clinicians with qualitative research experience) were asked an opening grand tour question

: “Please tell us about a memorable experience with telemedicine.” We then asked, “What made it memorable?” “What worked well?” and “What did not work well?” Interviewees were encouraged to reflect on MS specifically: “How do you see telemedicine being part of [your MS care/your MS practice] in the future?” Finally, interviewees were asked for their suggestions to improve the telemedicine experience. The PY questions focused on issues related to insurance coverage and competitive contracting for telemedicine for people with MS. The PYs were asked, “When it comes to coverage determination for telemedicine, what, if anything, has been unique for individuals with MS?”

All interviews were audio-recorded and transcribed verbatim except for 4 payer representatives who declined to be recorded but agreed to notetaking. Interviewees were offered a $50 honorarium.

 using the qualitative data analysis software MAXQDA (VERBI Software) to aid in the initial sorting and sifting of interview transcripts. Information from the 4 unrecorded interviews was also included. We analyzed the data primarily within and secondarily across the 3 categories of participants. The study team met regularly to review emerging codes,

 identify common themes, reach consensus on interpretations of interviewees’ comments,

 and select salient quotations to illustrate themes.

We recruited and obtained verbal informed consent from the final sample of 45 participants: 20 people with MS, 15 HCPs, and 10 PYs. The people with MS we interviewed were primarily non-Hispanic White (60%) and women (60%) from across the United States (

). We interviewed 15 HCPs: 4 neurologists (27%), 4 nurse practitioners (27%), 1 neuro-ophthalmologist, 1 neuropsychologist, 1 physical therapist, 1 physiatrist, 1 psychiatrist, 1 psychologist, and 1 social worker. They worked in university medical centers (53%), private practices (27%), and VA medical centers (20%); had practiced for an average of 17 years; and had a reported average of 67% of their practice as telemedicine at the time of the interviews. The PYs included 2 public (Medicare/Medicaid) (20%) and 2 commercial (20%) insurance representatives and 6 policy experts (60%) who represented national behavioral health and telemedicine advocacy organizations and information and telemedicine technology administrators.

The findings are organized into 4 thematic areas related to MS telemedicine: technology, clinical encounters, financing and infrastructure, and shifting expectations (

The COVID-19 pandemic sent everyone “scrambling,” the word used by HCPs and PYs to describe how it felt to shift care delivery. The significant benefits of telemedicine were noted by multiple interviewees and outweighed the challenges. The challenges were beginning to ease as familiarity with telemedicine technology and logistics were resolved. One PY (trade/advocacy) interviewee noted: “When [telemedicine] became a necessity…everybody was thrown in the deep end of the pool. And almost everybody said, ‘Hey, guys: we can swim!’ ”

Telemedicine increases access and convenience.

 For those who live far from an HCP, telemedicine is “literally a lifesaver,” a convenience that people with MS appreciated: “That’s 4 hours of my day that I don’t have to be in a car driving and paying tolls.” Meeting remotely made it possible for HCPs to contextualize people with MS in their family and home environment (quote 1) and expanded access to underserved patients (quote 2).

Technical challenges are most-cited downside to telemedicine.

 “None of us are IT specialists,” a psychologist said, describing being left to make appointments and troubleshoot technical and logistical challenges. Many shared a frustrating experience where they struggled to hear or see the other person or to find the correct telemedicine platform, especially early in the pandemic. Poor connectivity or camera quality interfered with a providers’ ability to do assessments (quote 3) and caused stress for both HCPs and patients (quote 4).

Although some HCPs expressed confidence in their ability to practice via telemedicine, many said they were uncertain about how to transfer their skills to the new medium and were learning through “trial and error.” Some people with MS expected a telemedicine visit to be more like an in-person office visit, leaving them wanting more assurance and guidance. A PY emphasized the importance of deferring to HCPs for what is or is not clinically appropriate when using telemedicine and were careful to remind the public that telemedicine is “not a panacea.”

 The HCPs and people with MS expressed confidence in using telemedicine for routine follow-ups or MS symptom management. A nurse practitioner noted that her patients liked telemedicine, “especially if they’re kind of on cruise control with their MS.” However, another nurse practitioner observed that patients “need to be in front of their provider to feel like they get the same input they need.” When assessing neurologic changes, some HCPs and people with MS preferred an in-person examination (quote 5), although an established patient-provider relationship increased confidence in meeting virtually (quote 6).

Some people with MS were uncertain about what was clinically possible via telemedicine compared with an in-person office visit. They followed their provider’s lead and had a vested interest in accomplishing as much as possible within their allotted time. Based on what their providers did or did not do, some people with MS felt: “You can’t truly get an examination via telemedicine.”

The HCP with little or no experience with telemedicine had to adjust, often “improvising.” The adjustments they had to make required some confidence in their ability to experiment and get creative. One PY recognized the HCP’s lack of comfort and experience (quote 7). Some HCPs, especially those with more telemedicine experience, were very positive and confident providing care remotely (quote 8).

Virtual “house call” has clinical benefits.

 The HCPs noted the significant benefit of seeing their patients’ home environments. This allowed providers to make clinically important observations, such as how patients moved within their physical space (quote 9) or who was in the home providing support. One nurse practitioner discovered that her long-time patient was a smoker when she noticed an ashtray on his deck.

For some people with MS, having their caregiver present at an office visit is critical as they rely on them to ask questions and take notes. Telemedicine made it easier for caregivers to attend visits and provided HCPs with opportunities to meet family and caregivers who might not otherwise attend an in-person appointment. The opposite may also occur; a caregiver who typically drives the person with MS to an in-person appointment may be absent from a telemedicine visit (quote 10).

One HCP noted that telemedicine made it possible to see her patients’ facial expressions at the time when masks were required for all face-to-face visits (quote 11). Some people with MS appreciated the added level of attention they received from their HCP, noting that there were no interruptions by beepers and “no rushing from room to room to room.” Some people with MS felt that when a new diagnosis needed to be communicated, it was best done in person (quote 12).

MS Telemedicine Financing and Infrastructure  

One PY described the COVID-19 pandemic as being responsible for “the single biggest transformation in health care delivery in 50 years; [and] it happened in 4 weeks.” This dramatic shift led to some growing pains and uncertainty for how sustainable the expansion of telemedicine would be in the near- and long-term future.

Reimbursement parity is critical to use and expansion of telemedicine.

 During the early pandemic, federal and state governments worked together to ensure access to telemedicine for all, including full reimbursement by payers for telemedicine visits and removal of “red tape,” such as relaxing licensing requirements and liability risks for telemedicine encounters across state lines (quote 13). Some individuals with MS appreciated waived co-pays for telemedicine appointments. Mental health providers found it easier to make the shift to telemedicine visits and could satisfy some of the unmet need created by the limited supply of mental health providers.

Stakeholders are hopeful and fearful as infrastructure and business models begin to shift.

 The consensus among those interviewed was that the change made during the pandemic should continue to enable telemedicine to become a permanent, viable alternative to in-person care. There was, however, uncertainty about the durability of structural changes that have made telemedicine possible (eg, provider licensing across state boundaries). Some HCPs and PYs were concerned that large provider groups and hospital systems might oppose continuing telemedicine because their budgets counted on revenue from facility and parking fees. Another concern was that insurers might use the lower overhead costs for telemedicine to justify reducing reimbursements (quote 14). Investors recognized the convenience and the value of telemedicine because they had used it, and therefore, as 1 PY said, he felt “optimistic” and “bullish.” Another PY noted that in terms of clinic efficiency, telemedicine decreased no-show rates. Finally, although we thought that PYs might be concerned about the potential for inappropriate or fraudulent billing for telemedicine, none had seen evidence that this had occurred to date.

We found a lack of consensus on what constitutes a good telemedicine visit. Individuals with MS had specific expectations that a telemedicine visit should involve checking vital signs or conducting physical or neurologic examinations in addition to history-taking and conversation (quote 15).

The familiar structure of the office visit is currently absent from telemedicine.

 Individuals with MS needed more intentionality during telemedicine visits, mirroring aspects of in-person visits. In a typical in-person visit, other HCPs in the office participate, for example, in the process of being “roomed” and having vital signs taken (quote 16). The flow of an office visit, 1 individual with MS said, should be “like a good movie that has a good beginning, middle, and end—that starts off and you look back to what you did before.” Some suggested adding virtual rooms and ancillary staff to provide the structure of an in-person visit. One person with MS particularly missed the help scheduling follow-up visits (quote 17).

Telemedicine visits need more intentionality from both providers and patients.

 Several HCPs and individuals with MS described being frustrated with what felt like a lack of respect during the telemedicine visit. One HCP was alarmed when a patient called into their telemedicine visit while driving (quote 18). Similarly, individuals with MS noted times where the HCP lacked “intentionality” by failing to consult past medical records or to otherwise prepare (quote 19). The PYs recognized the need for addressing the patient experience, and at least 1 technology company mentioned plans to develop a virtual waiting room to replicate some of the look and feel of an outpatient office (quote 20).

Health care delivery has been reshaped by the use of telemedicine during the COVID-19 pandemic. Some of what we documented revealed growing pains and steep learning curves. Unreliable internet and technical challenges with devices and software platforms will continue to plague telemedicine. With the passage of HR 3684, the Infrastructure Investment and Jobs Act,

 funds were designated to improve internet access for underserved tribal lands,

 Some form of technical support will be part of any telemedicine program that serves patients with neurologic diseases.

Technical issues with telemedicine are not unique to patients with MS and related neurologic disorders, but what is unique is the hands-on neurologic examination. Before the pandemic, individuals with MS expected and relied on live examinations to let them know if they had lost any ground since their last assessment. Without these points of comparison determined by a known, trusted clinician, some individuals with MS believed that remote examinations could not accurately determine their disease status. Similarly, some neurologists in the study said that they distrusted their ability to do a thorough and reliable assessment remotely, although others were confident in their abilities.

Some aspects of the remote neurologic examination are challenging, but not impossible, to perform according to the literature. In 2013, the equivalence between in-person and remote examinations was demonstrated with a patient aide.

 By 2019, work on the limitations of remote assessments had advanced to the point where Bove et al

 could report that “disability evaluation in mild to moderate MS is feasible using telemedicine without an aide at the patient’s location.” New technology is being developed to more accurately assess vision, cerebellar, and motor functions remotely.

 Questions surrounding provider confidence and competence and patient trust in remote neurologic examinations call for future research.

Education-, training-, and evidence-based guidelines need to establish effective clinical telemedicine programs for individuals with MS. The present findings suggest that lack of training in, exposure to, and experience with telemedicine limits what is possible via telemedicine. Even a self-described “old-school” neurologist who had been reluctant to try videoconferencing with his patients said he was pleased with the results and would consider adding components to his remote examination if he could learn more about the possibilities.

All clinicians who see patients with nervous system conditions could benefit from training in how to conduct a remote neurologic examination. Indeed, a substantial number of people with MS use their primary care physicians for their MS care. These patients are often older and have more severe impairments and are, therefore, likely to prefer telemedicine. The MS care providers could join with other provider groups to lower the cost of preparing and delivering training. With a platform such as Zoom, training and educational programs could use breakout rooms for clinicians who treat conditions affecting the nervous system, with demonstrations, practice sessions, downloadable materials, and Q&As on telemedicine, including how to conduct a remote neurologic examination. Understanding what specific quality measures can be gathered and what new tools have been developed to assess organ system function via televideo will build providers’ skills and confidence across disciplines.

Improved provider confidence will help individuals with MS trust their provider’s ability to measure changes in their clinical status. In addition, individuals with MS and their families need to know what to expect at a telemedicine appointment. They want to ensure that they can be seen and heard, to know how much time they have with the provider and when to bring out their list of questions. They would like the HCP to have reviewed the care plan. As with their providers, patients need educational telemedicine materials that include relevant research findings, use guidelines, technical training, and assistance avenues.

This report contributes to the growing body of literature on telemedicine use among individuals with MS and neurologic disorders, before

 by including perspectives from them, HCPs, and PYs. This study confirms the literature that indicates that people with MS embrace telemedicine as a health care option, particularly during a pandemic.

 It also adds the views of providers, payers, and policy makers to research that outlined the impact of COVID-19 on MS during the early weeks of the pandemic, focusing on retooling disease-modifying therapies, monitoring technologies,

 and the consequences of delaying care and rehabilitation.

Limitations to this study included the well-known challenges of recruiting payers and policy experts, resulting in a smaller PY sample than we would have liked; nevertheless, these interviewees offered an important perspective. Another weakness is that we interviewed only people with MS who had the technology to meet via some individuals-based platform. Some rural participants had a noticeable difference in internet quality and reliability.

Strengths of this study include a sample of individuals with MS that generally represents the demographic and disease characteristics of the MS population in the United States and a sample of HCPs that reflects the range of providers used by individuals with MS. Finally, these interviews took place 8 months into the COVID-19 pandemic, when telemedicine was the most prevalent if not the only way health care was being delivered and received. This created a unique opportunity to capture the early perceptions and insights of the participants while the adjustments they were having to make were still new, but with enough time so that all had experienced telemedicine.

Despite the technical and human challenges to shifting to telemedicine as a sustainable and effective method for delivering affordable, high-quality, and universally accessible health care, individuals with MS, HCPs, and PYs recognized the benefits of telemedicine. There is a growing need for telemedicine training for providers, clear messaging to allow individuals with MS to understand what to expect during a telemedicine visit, and stakeholder assurances that telemedicine will be supported beyond the pandemic. Further work is needed to establish guidelines for virtual care for individuals with MS. Although there is variability in how comfortable some HCPs are with providing and people with MS are with receiving assessments via telemedicine, access to the highest-quality MS care by telemedicine is feasible and desirable, and the promise of widespread connectivity is encouraging. We encourage stakeholders to work together to build skills, confidence, and comfort, alongside equitable access to MS care delivery via telemedicine.

A Qualitative, Multiperspective Inquiry of Multiple Sclerosis Telemedicine in the United States

Neurogenic bowel dysfunction ranks as one of the most frequent problems experienced by people with multiple sclerosis (MS); it is one of the first symptoms to appear at disease onset and continues throughout the course of the disease. This review, based on literature searches of Medline and PubMed, examines bowel dysfunction causes and cofactors (ie, impaired mobility, fatigue, depression and anxiety, childbirth) that occur over the course of the disease. Coverage includes management of bowel dysfunction with noninvasive methods, including diet and fluid intake, together with pharmacologic treatments for constipation and fecal incontinence as well as more advanced treatments (ie, biofeedback, abdominal massage, transanal irrigation, posterior tibial nerve stimulation), caregiver-provided treatments and extended care facilities. Bowel dysfunction problems and related cofactors impact quality of life throughout the MS disease course, requiring appropriate interventions to improve and/or maintain the quality of life of the individual with MS.

From the School of Nursing, Rutgers, The State University of New Jersey, Newark, NJ, USA (EEG). 

: Elise E. Gulick, PhD, FAAN, 28 Rocktown Hill Road, Ringoes, NJ 08551; 

 The author has disclosed no relevant financial relationships.

Multiple sclerosis (MS) is a chronic, immune-mediated, demyelinating disease with neurodegeneration that causes neurologic disability.

 Although the disease course begins as relapsing-remitting MS (RRMS) and transitions to secondary progressive MS (SPMS), 15% of individuals with MS have a primary progressive (PPMS) course. The majority of MS patients who begin with PPMS progress to secondary progressive MS (SPMS) characterized by continuous and irreversible neurological decline unassociated with relapse after 8–20 years. Approximately 10 years after onset, disease progression results in 50% of individuals with MS being unable to perform household and employment responsibilities, and 50% are nonambulatory 25 years after disease onset.

 During the disease course, most patients with MS experience symptoms of bowel dysfunction, including constipation, fecal incontinence (FI), and both constipation and FI, which are associated with decreased quality of life (QOL).

 Patients with MS ranked bowel problems as the third most bothersome symptom after fatigue and issues with mobility.

 Among patients with MS, estimates of constipation and FI range from 39% to 73%

; estimates of constipation from 26% to 31%; and estimates of FI from 12% to 20%.

 The aim of this review is to trace neurogenic bowel dysfunction (NBD) in persons with MS over the course of the disease, looking at neurogenic causes, related cofactors, treatments/interventions, and effects on the QOL of the individual with MS.

Neurogenic abnormalities of the colonic and/or anorectal function are the likely cause of constipation and defecatory difficulty in MS.

 Impaired rectal sensation, increased rectal capacity, and rectal hypercompliance reflect a combined sensorimotor neuropathy that contributes to fecal retention by decreasing the frequency and intensity of the desire to defecate.

 Rectal hypercompliance is a secondary distention with feces causing overstretching of the rectal wall and resulting in constipation. Manometric measurements administered to 49 patients with MS with constipation or obstructed defecation showed that evacuation difficulties were associated with sphincter muscle weakness and impaired basal and voluntary contractions.

Causative factors of FI include reduced sensation of rectal filling, poor pelvic musculature contraction, reduced rectal compliance, and weakness of the anal sphincter.

 Many patients with MS have reduced voluntary and anal squeeze pressure associated with external sphincter dysfunction, resulting in the inability to delay defecation by contracting the sphincter muscle. Sphincter hypotonia in patients with MS is correlated with FI.

 Cerebral MS lesions in the right temporal region may compromise sympathetic modulation and may facilitate parasympathetic output, which contributes to rectal hyperreflexia, as well as internal anal sphincter relaxation, which results in bowel incontinence.

Bowel symptoms are known to predate a clinically isolated syndrome (CIS) due to a demyelination event in the central nervous system. Data from 385 patients with MS, obtained from 2 tertiary care centers, reported that 31.6% had bowel symptoms before CIS; constipation (43.9%) was the most common, followed by diarrhea (31.8%), irritable bowel syndrome (IBS) (21.7%), and FI (2.5%).

 Patients with MS from an Australian sample showed onset of bowel problems with a mean ± SD of 5.4 ± 7.0 years before the MS diagnosis for PPMS and 4.6 ± 6.8 years for SPMS relapse onset.

 Similarly, in another sample of 57 patients with MS, 28.1% reported constipation and FI before their diagnosis of MS.

 Bowel problems are reported to be worse in patients with progressive MS than in those with relapse onset. Overall, the mean ± SD time between a first bowel symptom and a CIS event was 3.7 ± 3.4 years.

The type and prevalence of bowel symptoms were assessed in a cohort of 53 patients with MS 2 to 5 years after diagnosis: 81.5% had RRMS, 9.3% had SPMS, and 9.3% had PPMS.

 Bowel problems included flatus (32%), constipation (31%), diarrhea (16%), and FI (12%). Forty-five percent of the patients had constipation and/or diarrhea and/or FI. Bowel problems were significantly worse in patients with progressive onset compared with relapse onset after accounting for confounding factors such as age and disease duration, with differences being worse early in the MS course.

 Significant increases in fatigue, depression and anxiety were shown in PPMS patients than PRMS patients.

 showed an increased frequency of bowel symptoms in a sample of 136 individuals with MS with a mean disease duration of 18.2 years: 48.9% experienced constipation and 31.9% experienced FI. Study results showed a positive and significant association between both constipation and FI and MS duration after adjustment for age. A significant positive correlation was shown between severity of fatigue and both constipation and FI after adjustment for level of disability and age. Symptoms of constipation become exacerbated from fatigue and reduced ability to exercise.

Constipation, FI, or both constipation and FI are known to be associated with many related conditions, including impaired mobility, fatigue, depression and anxiety, and childbirth.

Impaired mobility can contribute to problems with bowel incontinence by adversely affecting visceral and pelvic floor function.

 Poor mobility was reflected in slow/impaired walking and poor balance in 28% of a sample of 56 individuals with MS and bowel difficulties.

 Walking and balance difficulties and bowel problems were significantly worse in patients with progressive-onset MS than in those with relapse-onset MS.

 One intervention used by individuals with MS to help alleviate constipation was improving mobility through exercise.

 A survey of 111 women with MS asked questions about their physical activity (housework, yard work, exercise, recreation) and time devoted to it; sorted by disability level (mild, moderate, cane use, scooter/wheelchair use), responses indicated significantly more physical activity in patients with mild or moderate disability, and they reported significantly fewer elimination symptoms than patients who used canes.

 Managing bowel function was rated as having an impact equal to mobility difficulties on QOL by 78% of survey respondents, who had a median age of 50 years.

Fatigue is one of the most frequently reported MS symptoms and includes feeling a sense of exhaustion, a lack of energy or tiredness, and muscle weakness.

 The relationship between fatigue and cortical atrophy in patients with MS showed that fatigue, measured by the Modified Fatigue Impact Scale,

 was significantly correlated with reduced thickness of the cortical region of the frontal lobe.

 Pre-CIS fatigue and pre-CIS sensory disturbances were significantly associated with bowel symptoms before the CIS MS event.

 Significant positive relationships between fatigue and the severity of FI and constipation were shown when adjusted for level of disability and age.

 Patients with progressive-onset MS reported high fatigue early in the disease course, with relatively little increase over time.

 Fatigue severity for patients with relapse-onset MS was low early in the disease course and increased more strongly over time. Fatigue is reported to be significantly worse in patients with MS with low fluid intake compared with those with high fluid intake. This is related to bladder dysfunction, which drives fluid restriction.

 Thus, increased hydration may be helpful for people with MS who experience fatigue, particularly for those with bladder-related issues. In addition, Racosta et al

 recommend managing fatigue through physical conditioning, avoidance of cigarette smoking, and improvement of sleep hygiene. Improvement in these 3 areas may help improve the perception of fatigue, possibly by regulating autonomic function.

Depression and anxiety disorders are mental states that become a part of NBD in persons with MS.

 More than 50% of patients with MS experience depression. Suicide is 7 to 8 times more prevalent in individuals with MS compared with age-matched controls.

 In a sample of 218 individuals with MS in which 40% reported constipation, 7% reported FI, and 4% reported both constipation and FI, mood disorders were common: 36% reported depression, 28% reported anxiety, and 18% reported both depression and anxiety.

 In addition, intestinal bowel symptoms were more common in patients with MS who reported a comorbid mood disorder.

 In a sample of 6312 individuals with MS, depression and anxiety were closely related to an IBS diagnosis.

 Depression, anxiety, and bowel problems were significantly more prevalent in patients with progressive-onset MS than in those with relapse-onset MS.

 Individuals with MS and functional constipation and IBS showed a significant association between feelings of depression and a lower QOL.

 Interventions shown to significantly improve feelings of depression and/or anxiety among individuals with MS include bowel biofeedback

Constipation among individuals with MS can be due to a vaginal delivery.

 Vaginal delivery, particularly of one’s first child, may result in significant pelvic floor tissue stretching and pudendal nerve damage, resulting in incontinence of flatus among primipara and incontinence of both feces and flatus in multipara.

 In addition, childbirth is associated with FI in patients with MS due to the interaction of central lesions, conus medullaris lesions, and coincidental pelvic nerve lesions.

Bowel dysfunction management requires rigorous assessment of the objective and subjective bowel symptoms by a multidisciplinary team. As MS progresses over time, disability and impairment need to be reassessed. Thus, the patient, their caregiver(s), and their health care team must jointly determine the need for noninvasive treatment and/or more advanced treatment, up to and including surgical procedures.

Initial management of bowel problems must begin with a review of current medications, especially bladder anticholinergics, baclofen, oxybutynin, codeine analgesia, and nonsteroidal anti-inflammatories.

 Medications such as muscle relaxants and anticonvulsants are possible contributors to constipation;

 metformin, statins, and antibiotics may cause loose stools.

Next, noninvasive procedures should be considered, including a toileting plan that considers timing to take advantage of the gastrocolic reflex and sitting position to exploit gravity; dietary interventions; and pharmaceutical approaches to increase the bulk of bowel motions, including the use of stimulants and/or local rectal preparations. Clinical experience dictates that a laxative regimen needs to be patient-specific because many variables affect efficacy. More than 1 laxative might need to be attempted before satisfactory effects are obtained.

 Active management of the neurogenic bowel is required to avoid constipation and FI to maintain QOL.

When the cause of bowel problems is unknown, treatment is largely empirical. Initial treatment for constipation often includes increasing fluid intake and following a high-fiber diet.

 Decreased dietary intake of grains has been shown to significantly increase elimination symptoms in severely disabled individuals with MS.

 Excessive intake of caffeine, alcohol, and foods containing sorbitol can cause stools to become loose and lead to FI.

 Dietary practices in studies with 123 to 335 individuals with MS showed inadequate nutrition and overweight/obesity in more than 50%, and most did not meet the United States Department of Agriculture’s recommended daily dietary intake.

 In contrast, a high-quality diet was associated with significantly lower depression and fatigue symptoms in a sample of 2015 individuals with MS.

 Dietary intake of fruit and vegetables and dietary fat predicted a better QOL and less likelihood of a higher level of disability compared with respondents with a poor diet.

 Results of a pilot clinical trial with 60 patients with RRMS who were randomized to follow a ketogenic diet for 6 months or a very-low-calorie diet for 3 of every 7 days demonstrated higher QOL than those in the control group.

Pharmacologic Treatments for Constipation  

 studied the efficacy of pharmacologic treatments for chronic idiopathic constipation using randomized placebo-controlled trials. Treatment time varied between 4 weeks

 Outcome measures included 3 or more complete spontaneous bowel movements per week and an increase over baseline by 1 or more complete spontaneous bowel movement per week.

 Data analysis used network meta-analysis.

 Treatments with prucalopride, bisacodyl, sodium picosulfate, and velusetrag were significantly more effective than placebo at 4 weeks or more. Treatments with prucalopride, linaclotide, and tegaserod were significantly more effective than placebo at 8 to 12 weeks.

 Of these, only bisacodyl was associated with adverse effects, including abdominal pain.

A systematic review of randomized controlled trials of laxatives for chronic constipation in long-term care patients conducted by Alsalimy et al

 found that senna in combination with bulk laxatives, ie, psyllium, were more effective than lactulose. Caution should be exercised when using lactulose because it is likely to cause or aggravate symptoms of bloating as well as having the potential of being ineffective.

 compared the effectiveness of polyethylene glycol–based bisacodyl (PGB) and hydrogenated vegetable oil–based bisacodyl (HVB) suppositories in improving bowel care for patients with spinal cord injuries. Comparison of a bisacodyl suppository based in polyethylene glycol (PGB) for a 2-week period 2–3 times per week was shown to reduce bowel care time by about 50% compared to similar patients given bisacodyl suppository based in hydrogenated vegetable oil (HGV).

 Similarly, 14 patients with upper motor neuron spinal cord injury given PGB bisacodyl suppositories for 6 sequential bowel care sessions was shown to stimulate reflex defecation sooner and shorter than the HVB suppository. 

 Fifteen patients with upper motor neuron spinal cord lesions given 3 PGB suppositories for each of 6 scheduled bowel care sessions also demonstrated a significant reduction in bowel care time than 10 similar patients given HVB suppositories.

 Suppository effectiveness was determined by the time, to the nearest minute, between insertion of the suppository and completion of bowel evacuation and cleanup. These 3 studies demonstrated that PGB suppositories significantly reduced bowel care time by approximately 50% compared with HVB suppositories.

 Bowel care with HVB suppositories included more digital stimulations during the defecation period than did PGB suppositories.

In addition to comparing the effectiveness of HVB and PGB suppositories, House and Stiens

 also compared the effectiveness of HVB and PGB suppositories with that of polyethylene glycol–based/glycerine/docusate sodium mini-enemas. The PGB suppository and the mini-enema produced significantly better and consistently similar results in total time for the treatment session, stool production, number of incontinence episodes, and number and total time of digital stimulations compared with the HVB suppository.

Pharmacologic Treatments for FI/Diarrhea 

In a double-blind crossover trial, 15 patients with chronic diarrhea were randomized to 4-week treatment periods to compare the efficacy of loperamide and codeine in alleviating incontinence.

 Both drugs significantly alleviated the symptom of urgency, improved stool consistency, and decreased the incidence of adverse effects, which included nausea and vomiting, drowsiness, dizziness, depression, and blurred vision obtained from daily diary recordings. Although not statistically significant, patients given codeine reported more adverse effects than patients receiving loperamide. The importance of diary recordings was also shown by Vaizey et al.

 who developed a new scale to measure fecal incontinence based on the patient’s daily record of fecal leakage, urgency, use of a pad, and medication taken for fecal incontinence.

In a double-blind randomized trial of FI, in which 24 patients received zinc-aluminum ointment and 20 patients were given placebo, both groups demonstrated significantly decreased Wexner Incontinence scores with a greater decrease in the treatment group after treatment.

 Although no adverse effects were reported, the authors indicate concern over the toxic effect that aluminum may produce in the central nervous system, but no evidence of topical absorption was shown with this treatment.

 Patients treated with zinc-aluminum ointment also had significant improvement in their Fecal Incontinence Quality of Life Scale scores (FIQLS).

 The FIQLS has been validated in the Spanish language based on 118 patients who suffered from FI that can be used as a measure of health in patients with FI.

Biofeedback is the next treatment for NBD when maximal laxative therapy within a bowel regimen has failed.

 Biofeedback has been used for the management of idiopathic constipation and pelvic floor incoordination. It teaches patients to be more conscious of a stimulus distending the rectum, to relax the anal sphincter, and to improve anorectal coordination and sensory perception, in addition to habit training pertaining to defecatory behavior and laxative use.

 Biofeedback can be administered in a physician’s office or a patient’s home, with similar positive outcomes and decreased cost when administered at home.

The few studies that have investigated the effect of biofeedback on patients with MS had prospective observational designs and small samples ranging from 13 to 52 patients.

 The effectiveness of biofeedback in managing bowel dysfunction was assessed by administering pretreatment and posttreatment

 anorectal physiological tests to determine anal resting pressure, squeeze, and endurance squeeze pressure

; rectal sensibility to balloon distention

Jay Costantini, MD

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