Practice Points
- Fatigue in multiple sclerosis (MS) was acknowledged as an important clinical problem by health care professionals (HCPs), but there is no current standardized assessment.
- By introducing a formal screening for MS fatigue that is quick to use and can be implemented in current care pathways, recognition of fatigue as a symptom that needs treatment may be improved.
- Fatigue treatments varied, sometimes including approaches that were ineffective, and HCPs from different disciplines tended to trickle this information through their respective areas of practice. Using a standardized, evidence-based behavioral treatment for MS fatigue, alongside training for HCPs in evidenced-based cognitive behavioral therapy and exercise treatments, could improve the consistency of fatigue care that people with MS receive in routine practice.
Fatigue is a fact of life for many people with chronic health conditions. This is particularly true for people with multiple sclerosis (MS), a lifelong, demyelinating disease of the central nervous system; 90% of people with MS report experiencing fatigue.1 Fatigue can be one of the most debilitating symptoms of MS, is the biggest predictor of poor quality of life,2 and is a key reason people with MS leave the workforce before standard retirement age.3
Behavioral treatments, particularly those grounded in cognitive behavioral therapy (CBT), and some exercise therapies are effective treatments for reducing fatigue in people with MS.4 However, a large United Kingdom survey showed that these behavioral fatigue treatments were rarely offered in routine care.1 In one study, of the 31% of participants with MS who were offered treatment for fatigue, 6% were offered behavioral therapy, 3% were offered exercise therapy, and 22% were offered drug-based therapies, which have shown no to minimal significant effectiveness in randomized controlled trials.5,6 Further, of the offered behavioral treatments, only 13% were purely CBT-based treatments, with more than half combining CBT with less effective treatments, such as those based on the principles of energy conservation.4
We currently know little about why people with MS are infrequently offered evidence-based treatments for fatigue, although there are some preliminary indicators from qualitative studies. In a study exploring beliefs about exercise and fatigue in MS, health care professionals (HCPs) expressed how difficult it can be to conceptualize, verbalize, and measure fatigue, despite it being a common symptom.7 Professionals spoke of having to do “detective work” to unpack how fatigue manifests in each person they treat, which, coupled with service barriers like time-restricted appointments, makes it difficult to detect and treat MS fatigue.
Researchers in another study reported that people with MS expressed some confusion over which fatigue treatments they believed were effective, specifically regarding whether exercise helps or exacerbates MS fatigue.8 Some of this uncertainty may be linked to different professionals giving different fatigue management advice; physiotherapists were more likely to mention encouraging people to increase their activity levels, whereas occupational therapists (OTs) tended to speak about promoting energy conservation to prioritize activities of daily living.7 Some HCPs noted that they sometimes felt as though they were “tinkering” with MS fatigue in the absence of an established evidence base for treating and supporting people with MS fatigue.7 Taken together, it seems that uncertainty and inconsistency in the fatigue care pathway may contribute to the fatigue treatment gap.
Regardless, we still know very little about how fatigue treatments are actually delivered in routine care, including how fatigue is detected and who delivers these treatments. Identifying what is working well and where there might be gaps will help inform more evidence-based treatment pathways for MS fatigue. Therefore, in this study we aimed to investigate how fatigue care is routinely delivered for people with MS.
Methods
Design
We conducted a multimethod qualitative study9 using semistructured focus groups and one-to-one interviews with HCPs working in MS services, alongside clinical observations of patient-clinician consultations in National Health Service (NHS) clinics in distinct regions of England. Adopting a critical realist stance,10 we explored the delivery of routine MS fatigue care through HCP insights interpreted by the researchers. We adhered to the consolidated criteria for reporting qualitative research in reporting our methodology.11
We estimated a sample size of 20 to 30 a priori using general standards of qualitative analysis.12 Researchers experienced in qualitative methods conducted analyses alongside data collection to determine when fewer new codes were generated, thereby guiding sample size and purposive recruitment.
Ethical approval was obtained through the King’s College London Health Faculties Research Ethics Subcommittee (HR/DP-22/23-34826), and Health Research Authority approval was gained through the Research Ethics Committee, West Midlands, Coventry, Warwickshire (23/WM/0165).
Participants
Participants were eligible if they were 18 years or older, lived and worked in the United Kingdom, and had experience working as an HCP with people with MS. Those invited to focus groups or interviews worked in the NHS, private practice, or nonprofit therapy centers. Observations took place in 4 NHS clinics in London, the South West, and the North East of England.
Participants were recruited through convenience and snowball sampling via community networks and 4 NHS services. We also approached participants through neurology or MS-specific conferences, charities, professional organizations, and social media. As data collection progressed, we used purposive sampling to ensure participants represented a range of disciplines. Five participants who consented dropped out of scheduled focus groups due to time commitments, even when offered a shorter one-to-one interview at a time of their convenience. Recruitment occurred between April 2023 and January 2024.
Procedures
Online Focus Groups and Interviews
All HCPs gave informed consent and completed a questionnaire about their age, sex, professional experience, current role, and service through an online survey. Focus groups lasted between 103 and 120 minutes, whereas interviews ranged from 54 to 63 minutes, all conducted and recorded via Microsoft Teams. Audio files were transcribed by a third-party transcription company and manually checked by the research team. Transcripts were pseudonymized. Focus groups and interviews followed a topic guide developed with input from nonparticipant HCPs experienced in MS (Table S1) to explore fatigue assessment, management, and treatment experiences.
Clinical Observations
All HCPs and people with MS received an information sheet and provided informed consent. Three researchers (E.O’C., H.W., O.T.) independently observed various clinical consultation formats: one-to-one or group, delivered in-person or online. Consultations focused on general MS checkups and MS fatigue-specific issues, and 1 group session focused on general neurological fatigue. Field notes were taken during consultations; researchers noted spoken content, verbal expression, tone, and body language, recording verbatim quotations where appropriate. One person with MS requested withdrawal of their observation data after the consultation, which was granted.
Analysis
Inductive reflexive thematic analysis was used to analyze all data.13 Researchers (E.O’C., T.F., T.S.) familiarized themselves with the transcripts and field notes. The primary coder (E.O’C.) generated semantic and latent codes relevant to understanding routine care in MS fatigue. Data extracts were coded into multiple codes where necessary. The coding process was data-driven and iterative, with frequent referral to the full dataset to ensure ideas had not been missed or misinterpreted. Initial themes were generated and later reviewed, redefined, and renamed. NVivo 14 was used to organize the data.
Predefined criteria and processes14 were followed to enhance the trustworthiness of the analysis. Regular data clinics facilitated discussions about coding and theme generation. A workshop with observers and the wider multidisciplinary research team helped contextualize the data regarding MS fatigue alongside qualitative insights from people with MS and their caregivers. Six MS HCPs, including 2 participants from focus groups/interviews, provided feedback on the analysis during a separate online workshop. The primary coder also consulted with a practicing occupational therapist in MS care. For a detailed reflexivity statement, see Table S2.
Results
Thirty-five HCPs participated in the study; 28 professionals took part in 6 focus groups and 6 interviews, while 10 professionals were involved in observations of 19 clinician-patient consultations. Three participants from a focus group were also observed during a consultation. The Table outlines the professional roles and demographics of the participants and the types of health care services that participated, including geographic locations.
Three themes with subthemes were generated to describe how participants delivered routine care for MS fatigue (see Figure). All themes and subthemes were generated from professional views expressed in the focus groups and interviews and the observations of professionals in routine clinical practice (see Table S3 for supporting quotations for each theme and subtheme). Participant quotations have been lightly edited for clarity while maintaining the original meaning.
Theme 1: MS Fatigue Is Not Formally Screened
To initially screen for MS fatigue, HCPs discussed using 2 informal methods: asking the person with MS whether fatigue is a problem for them or waiting for them to raise it as a priority symptom. Professionals noticed that both methods depended on the individual’s ability to recognize and articulate their experience of fatigue, which can be complex and difficult to unpack.
“I worked in the NHS until fairly recently…. We would perhaps have an assessment session, and I always asked people to bring their top 3 things they wanted to discuss. So, often people would bring fatigue as an issue, and then that would be, in a sense, easier because that was their priority…but it’s the people who don’t necessarily report fatigue. Again, going back to the cognitive [fatigue], the issues that people often don’t necessarily know that’s what perhaps underlying some of the problems that they’re having” (Focus group with physiotherapist 1, MS therapy center).
Professionals noted that these informal screening methods depended on people with MS acknowledging that fatigue is disrupting their lives. At times, it was evident that the normalization of fatigue as an accepted part of living with MS made this difficult. They reported that, even if MS fatigue is bothersome, some individuals may not report it or seek intervention, believing fatigue is something they “can’t do anything about” (observation of video consultation with MS nurse 4). Further, those who recognized the impact of fatigue but have “a lot going on in their lives” may overlook the benefit of fatigue intervention because “giving them loads of information is just another thing that makes them exhausted” (focus group with OTs 11). Professionals highlighted the limitations of detection methods, expressing concern that some people with MS may experience fatigue for a long time before receiving an opportunity for intervention. They also highlighted limited patient contact time, which makes it difficult to assess fatigue more formally, especially in the context of treating other MS symptoms.
Theme 2: Selling Self-Management for MS Fatigue
Once it was acknowledged as a problem, clinical management of MS fatigue focused on self-management. HCPs described using a “coaching approach” (OT10, NHS) to support people with MS taking an active role in management. Although some characterized reliance on self-management as enabling greater treatment “ownership” (OT 10, NHS), it was also regarded as the inevitable therapeutic option in the absence of a “magic pill” (interview with nurse 2, NHS). Part of the professional role involved managing treatment expectations and reinforcing the importance of active participation in fatigue self-management.
“At the end of day, you have to be the one to know where your limits are. We can’t be with you, you need to understand your own routine, so you’re not wiped out all day tomorrow” (observation of online group fatigue management session with OTs 14 and 15).
Professionals noted that encouraging people to engage in self-management was one of the most challenging parts of delivering fatigue therapy, especially with people who were more passive in their illness self-management, expecting the professional “to do something for them” (focus group with OT 6, NHS). Professionals acknowledged that encouraging self-management was often a gradual, nonlinear process that could be bolstered using tools like peer support. Although there was general agreement that information-giving was a foundational part of the professional role, professionals claimed that the coaching component was far more important in actively engaging people with MS in the self-management of their fatigue. Pharmacological treatments for MS fatigue were rarely mentioned and were branded as a sideline treatment to be used alongside self-management.
Subtheme 2.1: Conserving, Redistributing, or Increasing Energy?
One of the key self-management strategies identified from the data was energy conservation. Three key pillars of energy conservation were frequently mentioned: planning, pacing, and prioritizing. There were some inconsistent opinions among the professionals across the groups about whether energy levels were limited or whether they could be increased. Some professionals encouraged the introduction of rest to conserve energy, while others focused on the redistribution of energy expenditure, alluding to people having a limited amount of energy that they could reallocate to their most important tasks.
“I quite often talk about it in monetary values, in that across a month I’ve only got X amount to spend and there may be some months or some weeks that I really might want to prioritize doing something a bit special, and that might put me in deficit, but that’s OK.... So we’re not going to give them more energy, they’re just going to have to reprioritize how they’re going to spend it” (focus group with OT 2, NHS).
Conversely, professionals noted that people with MS could slowly increase activity levels over time, with the potential for gentle exercise to “reward you with more energy” (interview with nurse 3, NHS). While sometimes contradictory, professionals found these nuances useful in tailoring their advice to suit the patient. For example, they might encourage a person with a busy schedule to conserve their energy but ask a person with a sedentary lifestyle to steadily increase their activity levels. Although HCPs mentioned using CBT-based techniques, such as thought reframing, these were secondary to more "practical" strategies grounded predominantly in energy conservation (OT 9, NHS). Interestingly, there was no distinct pattern in which professions favored a particular type of fatigue management.
Subtheme 2.2: Helping People With MS Communicate About Fatigue
Another key self-management strategy championed by professionals was coaching people with MS to become more confident in communicating about their fatigue, explaining how it manifested, and what impacts it had. Professionals emphasized the importance of giving people the “language” (focus group with physiotherapist 1, MS therapy center) to comfortably explain their experience of MS fatigue, set boundaries, and recruit help to support self-management.
“I had a patient who worked in engineering, and they got a flag system, so every job that they did they had a red, amber, and green flag system, so she adopted that for herself. So, in the morning when she first got to work, she’d have a green flag on her desk and people knew that they could give her work…and then by the end of the day when she was a red flag, they knew that they couldn’t give her any more work to do and that she just had to finish what she got with no disturbance and she’d kind of utilized that system to set out very clearly how her fatigue impacted her” (focus group with nurse 2, NHS).
Professionals noted the negative impact of others not adequately understanding fatigue and perceiving the person with MS as lazy (focus group with OT 10, NHS), which professionals linked to a decreased likelihood in the person engaging with fatigue treatment.
Subtheme 2.3: Making Self-Management Meaningful
To increase engagement with fatigue self-management, professionals spoke of making management strategies feel more meaningful. One way they achieved this was to encourage the person with MS to work toward functional goals, grounded in things that mattered to them.
“When talking about adaptations to his routine, the occupational therapist suggested he get dressed later in the day, as he seemed to be more tired if he got dressed very early, or suggested he do some activities, such as a puzzle, that would ‘prompt him to rest’ in between other activities. The person with MS seemed quite resistant to this and said he just didn’t think he would change certain behaviors. The occupational therapist brought up his grandchild, who stayed with them once a fortnight and visited often. Having this motivating factor seemed to really help the person with MS focus on making these small changes. He agreed to start showering in the evening before a long day so that it wouldn’t be an extra tiring activity” (observation of home visit consultation with OT 17).
Some professionals also mentioned that they used a variety of outcome measures to evaluate fatigue therapy, focusing on function as well as severity. For example, focusing on the person’s satisfaction with their ability to do activities allowed people with MS to identify improvements that may have otherwise remained invisible, enabling them to act in ways that might improve their fatigue. HCPs said that shifting the focus to person-centered measures could allow fatigue management to feel more meaningful, and subsequently, more engaging. They also used metaphors to make fatigue self-management strategies feel more meaningful, relevant, and accessible, such as financial references like “budgeting energy” (interview with occupational therapist 9, NHS) to encourage people with MS to spend their energy more wisely.
HCPs used a similar redefinition approach to get people with MS to engage in exercise. While they acknowledged that exercise can be walking on a treadmill, “parking a few roads away from your kid’s school and walking” (interview with service manager 1, NHS) could be a more functional and meaningful way to incorporate exercise into everyday life.
Theme 3: MS Fatigue Cannot Be Treated in Isolation
HCPs explained that the multifaceted nature of MS fatigue makes it difficult to treat as an isolated symptom. The close relation of fatigue to other symptoms, including bladder and cognitive dysfunction, spasticity, pain, and adverse medication effects, can worsen fatigue or make it harder to engage with fatigue management strategies.
“The neurologist asked her about sleep, to which she said she gets approximately 5 hours in ‘fits and starts’ across the night due to her pain or needing the toilet” (observation of in-clinic consultation with neurologist 2).
Sometimes these secondary causes of fatigue could be addressed within fatigue management (eg, poor sleep), but some overlapped with other aspects of symptom management. This overlap could involve referrals for bladder or psychological symptoms, or reviewing medications that cause drowsiness, which may draw on the expertise of others. As a result, HCPs spoke of the need to treat MS fatigue holistically, noting that they often see people with various complex needs that interact and require care coordination.
“[P]eople are broken down into areas, fatigue over there, so refer back to physio for the physical needs. And something that we tried to bridge that gap is [the multidisciplinary team] approach and actually, ‘Let’s do some joint work; we’ll do a joint assessment’” (focus group with OT 6, NHS).
While HCPs were often in favor of a holistic approach as a more effective way of treating MS fatigue, services were not always configured to allow for this. The reality of long waiting lists, large caseloads, and staff shortages made it difficult to promote a truly multidisciplinary team approach; accessing psychological input was particularly difficult.
Subtheme 3.1: Fatigue Management Trickles Through MS HCPs’ Practices
While referrals for more intensive fatigue management were usually made to occupational therapy, fatigue management also trickled in from all members of the multidisciplinary team. All professionals spoke of giving fatigue management advice, often “planting some seeds” (interview with nurse 3, NHS) to encourage people with MS to think about changing their lifestyle and finding ways to conserve their energy. Even though it was perceived that OTs must deal with fatigue as one of their main professional priorities—“the OTs do fatigue, cognition, and work” (interview with nurse 5, NHS)—nurses and physiotherapists could also deliver fatigue management, depending on how their practice was staffed, resourced, and configured. Neurologists, while involved in making fatigue referrals and signposting to other care, were far less involved in fatigue care. During neurology consultations, fatigue could be more easily overlooked due to the nature of neurologists’ priorities, which were focused on checking for symptoms that might indicate disease relapse or progression.
The nature of professionals’ roles and their respective priorities contributed to how much input they had in fatigue management. This was particularly the case for nurses who act as a “screening point” (focus group with nurse 1, NHS) to detect and intervene for all MS symptoms, meaning that they may naturally have less time to dedicate to fatigue management.
“…[T]he MS nurses know all about this; it’s the fact that they don’t have time to concentrate on many specifics with each patient if they are catching up with them and they’re dealing with what the patient is worried about at the time, which is, let’s face it, there’s a lot. They’re going to be contacting about relapses and drugs…” (focus group with physiotherapist 4, private).
For some services, there were doubts about how successful the trickle-down approach to fatigue management was. For example, an OT noted that some physiotherapists who focus more on the motor side of fatigue “might start a bit of education and they might do a bit of pacing, but they just feel like they’re playing at it” until occupational therapy can step in (focus group with OT 10, NHS). As a result, professionals acknowledged that people with MS may receive varying levels of fatigue treatment depending on the professional they see. For example, some community services can only deliver “basic advice” when there is no one to accept fatigue referrals (interview with service manager 1).
Discussion
To our knowledge, this study is the first to explore routine care for MS fatigue using multiple qualitative methods. Our findings show that MS fatigue is not formally screened in standard practice, and individuals with MS are expected to recognize and report their fatigue. Much of fatigue care relies on HCPs encouraging self-management and the adoption of energy conservation principles, though interpretations of some of these interventions varied. Our findings show that MS fatigue is not treated as a standalone symptom, as its management is intertwined with other MS symptoms. Professionals described fatigue management trickling in from all members of the multidisciplinary team, rather than a specific focus always being administered to treat fatigue.
The absence of routine formal screening for MS fatigue contributes to the gap in our understanding of why so few people with MS fatigue receive treatment.1 Our finding is perhaps unsurprising given that the current National Institute for Health and Care Excellence guidelines recommend that HCPs simply ask about fatigue rather than implement formal screening measures.15 A recent study examining the electronic health records of an MS center in the US found similar problems with screening, noting that none of the 260 patients had completed a fatigue assessment scale.16 Although we found that professionals sometimes asked about fatigue, they also reported waiting for people to raise it as a priority, which is concerning given the challenges of identifying MS fatigue,7 especially without professional guidance.17 Implementing formal screening for MS fatigue may enhance treatment provision. There are several validated fatigue scales in MS18-20 that can be completed quickly and could be routinely administered electronically or in waiting rooms before appointments. The Chalder Fatigue Scale18 has a recognized clinical cutoff and could be used to start conversations. However, further research may be required to understand how fatigue screening might be best integrated into existing work structures.
We also gained insight into the content of MS fatigue treatments that are currently being used in routine care. A quantitative patient survey suggested that more patients were offered pharmacological rather than behavioral treatment.1 Despite this, we found that behavioral strategies, notably self-management based on energy conservation principles, were perceived as the first-line treatment by HCPs, with pharmacological treatments seen as supplementary. Research also suggests that CBT-based and some exercise-based treatments are more effective than energy conservation.4 Although the professionals interviewed in our study were consistent in citing the benefits of exercise for MS fatigue (even though previous findings suggest that the need for exercise has not always been clear to people with MS8), they mentioned CBT techniques much less frequently. Further research is needed to explore this evidence-to-practice gap, although poor access to CBT training has been suggested as a systemic barrier to the delivery of CBT in real-world practice.21 Ensuring that CBT training is accessible to professionals who are nonspecialists in psychological therapies, such as OTs and physiotherapists, will be crucial for delivering the most effective behavioral treatments for MS fatigue.
We also identified inconsistencies in how professionals interpreted behavioral and exercise treatments for MS fatigue. Although not an aim of the study, in contrast to previous findings,7 we did not observe differences in the tendency of OTs and physiotherapists to favor either energy conservation or exercise therapy in their discussions with people with MS. Differences were apparent regarding whether energy levels are fixed or can increase, particularly when exercise therapy and energy conservation were used in conjunction. While variations in fatigue treatment are important to suit the needs of different people, the basic principles of these treatments should be delivered consistently. The lack of specification in current professional guidelines for managing MS fatigue may perpetuate inconsistent delivery,7,15 although the trickle-down approach may also contribute. While this approach allows professionals to collaborate on a multifaceted symptom like MS fatigue, there should be enough standardization in fatigue care to ensure people with MS receive similar opportunities for intervention, regardless of which HCP they consult.
Conclusions
This study has several clinical implications and directions for future research. Our findings underscore the need for standardized screening to improve the detection of MS fatigue in routine care. Future research should explore alternative screening methods to assess the effectiveness and feasibility of implementing formal screening measures across diverse MS services. Clearer HCP guidance is also needed to ensure consistent delivery of fatigue management advice, while still allowing for individualization. Our findings emphasize the importance of HCP training to support the delivery of evidence-based treatments for MS fatigue, making it accessible and relevant to their roles. In addition, existing education and training for HCPs should be explored to understand whether improvements could be incorporated early on. Future research should provide clearly documented treatments for MS fatigue and develop clinical training competencies for treatments that show clinically significant effects. There are some existing evidence-based protocols available that have demonstrated small effects in clinical trials.22 Training professionals in these methods could address some of the issues raised in this paper, but this will require the availability of staff to implement them. Digital interventions offer a way to scale interventions with reduced or no support, but there is still some economic cost to widespread implementation. Health care systems need to view behavioral treatments as priorities to make these investments. Our findings also highlight important aspects of fatigue care endorsed by professionals, such as helping people with MS communicate their boundaries and making self-management meaningful, which should be considered in the development of future behavioral fatigue treatments.
The strengths of this study reside in its novelty in using in-depth qualitative methods to provide a broader understanding of routine care for MS fatigue, drawing on the experiences of HCPs and observations of clinical consultations across various parts of the UK. Yet, this study also has limitations. Professionals who volunteer to discuss MS fatigue may have a heightened interest in the topic or work in services where fatigue is prioritized. In addition, participants were aware of the researchers’ interest in fatigue, which may have altered their behavior during consultations. Although we aimed to recruit professionals and services from diverse regions and roles, the variability in MS services across the UK may limit the relevance of our findings and prohibit generalizations to all services. Further, we failed to recruit neurologists to our focus groups or interviews due to scheduling conflicts; thus, their perspectives are not represented in this study. This introduces an area for future research.
Overall, our findings enrich our present understanding of routine care for people with MS fatigue and provide context for the development and implementation of future evidence-based behavioral treatments.
