Content

Issues

Research

Permissions

Community Content

Videos and Multimedia

IJMSC Awards

Cover Art

For Authors

Information for Authors

Manuscript Submission

Patient Consent Form

About IJMSC

Aim and Scope

Ethics

Editorial Board

Peer Review

Contact Us

Home

Advertising

IJMSC

1rem

Authors

High-quality MS specialist nurse care should be expanded to reach as many people with MS as possible by expanding the MS nurse workforce by means of adequate funding and increasing the uptake by facilitating improved distribution channels of information about the advice and various types of support that MS nurses provide. 

Cross-Sectional Study of Multiple Sclerosis Nurse Care in Australia: Patterns of Access, Improved  Health Outcomes, and Recommendations: Part 1

Tumefactive demyelination (TD) is often misdiagnosed as central nervous system malignancy. We report on 4 patients 65 years or older with TD whose initial misdiagnosis led to biopsy or resection. This series draws attention to TD as an uncommon cause of cerebral lesions in older patients. We highlight the importance of MRI and ancillary tests to diagnose TD and avoid invasive investigations.

 The authors received no financial support for this article.

Carla De Pasquale, MD, has no disclosures. Michael H. Barnett, PhD, has received speaker honoraria and scientific advisory board fees from Alexion, Clene Nanomedicine, Merck, Novartis, Roche, and UCB; is a cofounder of RxPx; and is research director for the Sydney Neuroimaging Analysis Centre. Todd A. Hardy, PhD, has received speaker honoraria, conference support, and scientific advisory board fees from Alexion, Bayer Schering, Biogen Idec, Bristol Myers Squibb, Merck, Novartis, Roche, Sanofi-Genzyme, and Teva.

Tumefactive demyelination (TD) refers to a demyelinating brain lesion that mimics a central nervous system (CNS) tumor on neuroimaging.

 TD occurs in up to 8.2% of cases of multiple sclerosis (MS).

TD can present in patients with or without known MS.

 Symptoms vary depending on lesion location and associated edema or mass effect.

 MRI is useful for making the diagnosis and excluding common alternative diagnoses such as CNS malignancy, metastasis, or lymphoma, although misdiagnosis can occur.

Brain biopsy should be considered for patients with imaging atypical for TD or when there is a high suspicion of CNS neoplasm.

 Intravenous corticosteroids are commonly used to treat acute attacks,

 and MS disease-modifying therapy (DMT) is generally reserved for those with an MS diagnosis.

The occurrence of TD in older patients is not widely known, and case reports are rare.

 The peak incidence of TD occurs in the fourth and fifth decades of life, with a mean age of onset of 38.5 (SD, 15.39) years.

 In a study of 31 patients with TD, 4 were 65 years or older.

In this case series, we present 4 patients with TD older than 65 years who were initially misdiagnosed with tumors and describe their presentation, diagnosis, treatment, and outcomes (

). In 3 cases, patient consent was obtained, and, as the fourth patient was deceased without a contactable next of kin, a waiver of consent to include this patient’s anonymized details was obtained from the Concord General Repatriation Hospital Human Research Ethics Committee (application number 2023/ETH01695).

A 67-year-old woman presented with a 1-month history of cognitive decline, headache, left-hand weakness and numbness, left facial droop, urinary urgency, and falls. Her medications were esomeprazole for reflux and continuous estradiol/norethisterone acetate. She was vaccinated against influenza 1 month and against COVID-19 (ChAdOx1) 2 months prior to presentation.

A brain MRI revealed an isolated, ring-enhancing lesion of the right corona radiata with surrounding vasogenic edema. She was treated with dexamethasone 4 mg twice daily, and the lesion was resected 13 days later due to suspicion of malignancy. Histopathology confirmed a primary demyelinating process with numerous foamy macrophages, perivascular infiltrates, and reactive astrocytosis, with no features suggesting acute disseminated encephalomyelitis (ADEM).

No immunotherapy was started. Eighteen months later, the patient had residual urinary urgency, reduced visuospatial awareness on the left side, and mildly delayed processing speed, but there was no new MRI activity.

A 72-year-old man presented with right-sided visual loss and expressive dysphasia that started 24 hours earlier. His medical history included hypertension, hyperlipidemia, and mitral valve prolapse. His medications were amlodipine, atorvastatin, and vitamin D. He had received the shingles (Zostavax) and influenza (FluQuadri) vaccinations, administered together, 3 months prior to presentation.

An MRI of the brain showed a solitary, large, poorly circumscribed lesion in the left temporal lobe with moderate central gadolinium-enhancement and a peripheral edge of restricted diffusion. Brain biopsy showed sheets of macrophages and perivascular lymphocytes accompanied by myelin loss and relative preservation of axons with rare Creutzfeldt astrocytes. There were no perivenous cuffs of T lymphocytes or macrophages associated with edema to indicate ADEM.

Five weeks after presentation, he received 3 days of intravenous methylprednisolone (IVMP) 1 g daily. He had a minor improvement in dysphasia and persisting right homonymous hemianopia. No immunotherapy was started. Four years later, he was clinically and radiologically stable.

An 82-year-old man presented with dysarthria and a history of emphysema and rheumatoid arthritis treated with prednisolone 5 mg daily and sulfasalazine.

An MRI of the brain demonstrated an enhancing lesion in the deep white matter of the left cerebral hemisphere and multiple periventricular white matter lesions reported as chronic small vessel disease. Histopathology of the resected lesion confirmed demyelination with scattered prominent gemistocytes and marked infiltrate of foamy histiocytes, as well as T lymphocyte predominant perivascular and mild interstitial lymphocytic inflammation. A Creutzfeldt cell was noted. A diagnosis of MS was made retrospectively after recognition that the periventricular lesions were typical of MS.

He received 3 days of IVMP 1 g daily, with mild improvement in speech. He requested MS treatment and commenced teriflunomide 14 mg daily. At 9 months of follow-up, he remained free of further MS disease activity.

A 70-year-old man presented with a subacute onset left hemiparesis with pseudoathetoid movements of the left hand and left-sided neglect. His past medical history included idiopathic neutropenia, hyperlipidemia, and Meniere disease.

An MRI of the brain showed a lesion in the right parietooccipital lobe with poorly defined peripheral enhancement and a mild to moderate burden of chronic small vessel disease. Brain biopsy indicated demyelination consistent with primary demyelination with numerous macrophages, some reactive astrocytes, and scanty perivascular and interstitial lymphocytes. Post biopsy, he was treated for focal motor seizures with levetiracetam and clonazepam.

He received 3 doses of IVMP 1 g daily, with improvement in mobility. No immunotherapy was started. There was no further clinical or radiological disease activity after 14 months of follow-up.

We describe 4 cases of TD in patients older than 65 years. The initial diagnosis in these cases included stroke, CNS lymphoma, and glioma. All of the patients were exposed to the risks of lesion biopsy or resection prior to diagnosis.10 We propose that biopsy could have been avoided for the patient in case 3, where other MS lesions on the MRI suggested a demyelinating pathology, and for the patient in case 1, who presented with an open, ring-enhancing lesion with the incomplete portion facing the gray matter, a specific imaging finding for TD.

The patients in cases 1 and 2 presented with TD following vaccination. TD can be a manifestation of ADEM, but the current diagnostic criteria for ADEM require polyfocal neurological deficits and MRI lesions. These patients, however, presented with neurological deficits caused by a solitary TD lesion. These 2 patients also had brain histopathology more consistent with primary demyelination due to MS rather than ADEM. Lesional histopathology characterized by perivenous demyelination is typical in ADEM in contradistinction to the confluent demyelination seen in MS. In addition, all patients were myelin oligodendrocyte glycoprotein antibody negative on cell-based assays, an important finding as ADEM is a common clinical phenotype of myelin oligodendrocyte glycoprotein antibody–associated disease.

Although there are no pathognomonic findings for TD, aside from histopathological confirmation, the typical features of TD that favor the diagnosis are outlined in 

. Although less informative in our cases, cerebrospinal fluid (CSF) findings, brain and whole-body PET, MRI of the spine, and serum autoantibody and vasculitis screening are important tests before biopsy. CSF-restricted oligoclonal bands (OCBs) can support MRI findings in suggesting demyelination; however, only 52% of cases of TD without known MS present with unmatched OCBs.6 CSF OCBs were negative or matched in serum in all our cases, although not tested until after biopsy. All 4 cases demonstrated raised CSF protein, which, although not typical of MS, may be indicative of the older age of our patients

 or secondary to brain biopsy. A hypometabolic appearance on brain PET is also reassuring in excluding lymphoma or a high-grade CNS neoplasm. We suggest that CSF studies and PET imaging should be completed before biopsy if there is diagnostic doubt about a demyelinating process vs a tumor.

A detailed discussion of the approach to diagnosis and therapy of TD is beyond the scope of this article but has been extensively reviewed by the authors in a recent publication.

 In short, a 3-day course of intravenous methylprednisolone is an appropriate initial treatment for most TD lesions, with follow-up imaging in 4 to 6 weeks to assess response. After this initial period, ongoing decisions about commencing immunosuppression or MS DMT for TD should relate to whether the patient otherwise meets diagnostic criteria for MS (eg, due to the presence of other demyelinating lesions). MRI and clinical surveillance are recommended in all cases, even those not starting long-term therapy.

Only the patient in case 3 fulfilled diagnostic criteria for MS and was started on an MS DMT. Caution is recommended when beginning immunotherapy as older patients with TD may be more vulnerable to the adverse effects of immunosuppression and are less likely than younger patients to have subsequent attacks.

 Cases 1, 2, and 4 did not merit initiation of a DMT as the patients had a monophasic CNS demyelinating  event presenting as a tumefactive demyelinating lesion. These are better defined as cases of TD rather than MS while they remain monophasic. Also, at their age, it is unlikely that the patients’ conditions will evolve into MS.

This case series highlights TD as a differential diagnosis in people older than 65 years with a CNS lesion. Recognizing the typical findings on imaging, with supporting ancillary testing, could provide an opportunity to avoid misdiagnosis and unnecessary, invasive histopathological sampling.

Although more common in younger patients, tumefactive demyelination can occur in adults 65 years and older. It should be considered as a differential diagnosis in patients of this age presenting with a central nervous system lesion.

Tumefactive Demyelination in Older Adults: Diagnosis and Misdiagnosis

Being diagnosed with multiple sclerosis (MS) marks a significant turning point in a person’s life, with substantial impact on quality of life. Key aspects of effective treatment include how people with MS are cared for and their adherence to treatment. This study aimed to investigate the lived experiences of people with MS.

The study was guided by a phenomenological and hermeneutic approach. Thirteen semistructured face-to-face interviews were conducted with people diagnosed with MS within the past 5 years who were recruited from 3 Danish MS clinics. A reflexive thematic analysis approach was applied to analyze and interpret the data.

The transition from being a healthy person to a person living with an MS diagnosis is challenging. Our analysis revealed that people with MS were particularly vulnerable during the diagnostic process and often shared emotionally impactful experiences. After diagnosis, they adjusted to new priorities and demonstrated resilience, finding ways to navigate life with MS. We identified 3 key themes from the interviews: understanding and proving symptoms, considering treatment and how to disclose MS, and living hopefully with MS.

Interviewees living with MS in Denmark frequently mentioned challenging symptoms and diagnostic complexity, as they often felt misunderstood when trying to explain their symptoms. For health care professionals, understanding patients’ experiences from initial symptoms to diagnosis and treatment is crucial. The resilience and adaptation of people with MS highlight the importance of holistic approaches to treatment, which foster their hopes for the future.

The authors would like to thank the 3 clinics for helping to identify relevant interviewees. Finally, the authors would like to particularly thank all interviewees for sharing their valuable experiences and goodwill in participating.

Tobias Sejbæk, PhD, has in the past 5 years received travel grants from Biogen, Merck, Novartis, Roche, and Sanofi; received research grants from Biogen, Merck, Roche, and Sanofi; and served on advisory boards for Biogen, Merck, Neuraxpharm, Novartis, Roche, and Sanofi.

Our research methods were presented at the Nordic Conference in Nursing Research; October 4, 2024; Stockholm, Sweden.

Being diagnosed with multiple sclerosis (MS) marks a significant turning point in a person’s life, as MS is a chronic disease that affects the central nervous system by damaging the brain and spinal cord, impairing cognitive, sensory, gait and balance, bowel and bladder, and motor functions.

 MS causes various serious symptoms such as blurred vision, weak limbs, tingling sensations, and fatigue.

 Globally, 2.9 million individuals live with MS, and Denmark has one of the highest prevalences, with more than 18,000 people living with MS.

 Early diagnostics and initiation of disease-modifying therapy (DMT) are crucial to reduce disease activity and to foster a better long-term prognosis.

 An additional key aspect of effective treatment is how people with MS are cared for and how well they adhere to their treatment.

Denmark offers free health care designed to deliver high-quality, timely treatment to all citizens.

 The general practitioner (GP) is responsible for referrals to specialist providers.

 Danish MS treatment occurs in 12 MS clinics, distributed nationwide to allow universal access to treatment and care. Each clinic reports patient data to the Danish Multiple Sclerosis Registry, including DMT use and other standard quality variables, such as MRI results and scores on the Expanded Disability Status Scale.

 However, there are limited data regarding patient perspectives and patient-reported outcomes for use in clinical care.

 This knowledge seems to be particularly important as symptoms and lives with MS vary widely between individuals; some experience periods of relapse and remission, whereas others have a more progressive pattern of disease.

 This unpredictability significantly impacts quality of life for individuals with MS and their families.

 Further, results from several studies have found that listening to and acknowledging the personal experiences of people with MS and their families is crucial for health care professionals (HCPs) to provide tailored treatment and care.

Even with Denmark’s comprehensive data registry, a clear understanding of how people experience living with MS is missing. This is concerning, given the recognized importance of addressing individual needs in this heterogeneous population

 and a growing body of evidence suggesting that understanding individual experiences can support adjustment to life with an MS diagnosis.

 As social and cultural contexts may limit how broadly previous findings can be applied, further research is needed to explore experiences within specific settings.

 This study seeks to address this gap by examining the lived experiences of individuals with MS in Denmark, offering insights to inform clinical practice and patient-centered care.

A phenomenological-hermeneutic approach was used to explore how people with MS experience and make sense of life, using individual, semistructured, face-to-face interviews. Reflexive thematic analysis, conducted inductively, supported an open, interpretative analysis of the narratives about living with MS, integrating researcher reflexivity.

 This analytical approach was chosen because it aligns with our epistemological stance, captures the depth of lived experiences, and enables a nuanced interpretation of meaning while embracing the researcher’s active role in knowledge production.

Interviewees received oral and written information and signed informed consent. The study complied with World Medical Association Declaration of Helsinki and data protection was approved by the Region of Southern Denmark (20/27885).

Three MS clinics were chosen to allow for local differences in MS management and organization. Each clinic identified and selected relevant people who met our inclusion criteria. A total of 19 individuals diagnosed with MS in the past 5 years, all of whom had been treated with the same DMT, dimethyl fumarate, within the past year, agreed to be contacted and schedule an interview. Prior to the interviews, all participants received informational material via email. Subsequently, a total of 13 interviews were conducted. Participants were proficient in the Danish language.

The 13 interviews were conducted by one of the authors (C.M.) between February 2023 and December 2023. Screening for inclusion criteria was systematically performed before obtaining informed consent. At Clinic 1, 5 people consented and were interviewed. At Clinic 2, 4 people consented, of whom 3 were interviewed. At Clinic 3, 5 people consented and 3 were interviewed. Subsequently, 5 additional people agreed to be contacted; 2 met the inclusion criteria and were interviewed. Interviews took place at locations chosen by participants: 11 in their homes, 1 at a workplace, and 1 at C.M.’s workplace. In total, 13 interviews were included in the analysis. 

The interviews followed a predeveloped semistructured guide inspired by the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) Core Set for MS, which emphasizes how MS affects health and functioning based on environmental influences.

 Each interview lasted approximately 1 hour, was audio-recorded, and was subsequently transcribed verbatim using Amberscript software. CM initiated the interview with the open question “Tell me about when you were diagnosed with MS” to encourage participants to expand on aspects of their experiences that were most significant to them. 

Authors L.S.M. and L.P.B. are a researcher and a research assistant, respectively, both with clinical nursing experience in the field of MS. Author B.B.N. is an experienced nurse researcher in the rehabilitation of people living with chronic diseases. She has also used the ICF framework for research. C.M., a lecturer with experience in MS care, conducted the interviews. All 4 authors actively engaged in the reflexive analysis process, drawing on their insights and preconceptions. The analysis process followed the phases outlined by Braun and Clarke.

 The authors initially familiarized themselves with the interview data by transcribing, reading, and rereading while noting initial ideas and reflections. Next, initial codes were developed, identifying interesting features across the entire data set and collating data relevant to each code. Third, codes were grouped into potential themes. These themes were subsequently reviewed, ensuring that they aligned with the coded extracts and the entire data set. Finally, the themes were developed, reflecting the overall narrative conveyed by the analysis.

The transition from being a healthy person to a person with MS was marked by fluctuation, with periods of advancement and regression. In the interviews, the authors recognized 3 major transition themes: first, recognizing early signs of the disease (understanding and proving symptoms); second, diagnosis and start of DMT, including telling others about their diagnosis (considering treatment and how to disclose MS); and third, the process of learning to live with and manage MS (living hopefully with MS).

Theme 1: Understanding and Proving Symptoms

People with MS described their first MS symptoms in detail and often metaphorically. The time between their first symptoms and their diagnosis varied, and their descriptions of this period often entailed strong emotions and difficult thoughts.

When describing their first symptoms, people with MS often expressed frustration, as they primarily remembered them as strange, incomprehensible, and unpredictable. The period between first symptom and first health care system contact differed: “But there has actually been some suspicion that I might have had it as far back as 2016 or so because I’ve had a lot of symptoms like sensory disturbances and all those kinds of things. But then I went to see my GP, and they more or less told me to stop making a fuss” (ID 2).

Because of this time difference, some people experienced a convoluted journey through the health care system whereas others had a more straightforward process. Some faced misunderstanding and mistrust of their described symptoms. Others met with HCPs who immediately recognized the signs and referred them to an MS clinic. These different paths led to people having to prove their symptoms to the system, and some were even met with rejection, as their perceptions were questioned by the HCPs. Although some people ignored their initial, often milder symptoms, thinking that these strange signs would pass, others had more severe symptoms (eg, paralysis in the upper or lower body) and sought emergency medical attention: “We were renovating the house and had a boiler room in the basement that needed to be cleared out…. And then in the evening, I felt a tingle in my legs, especially my left leg, and a bit in my right leg too. And I thought maybe something was stuck in my back, something like that, and maybe I was just tired. Overexertion or something. And then the next day, it actually spread and started going up my back and into my chest. And then I got a bit nervous, so I went to the doctor the day after, 2 days later” (ID 13).

People with MS often mistook their symptoms for other health-related conditions. Although signs of MS seemed to evolve over time, for some individuals, they developed rapidly with significant intensity. Some imagined and worried about serious, life-threatening diseases, whereas others suspected MS: “At that stage, I started having severe pain behind my eye and very blurred vision. I went to the ophthalmologist and found out that I had optic neuritis. From there, I was referred further because it is often said that 50% of those who get optic neuritis may have multiple sclerosis” (ID 3).

Due to the variety of symptoms, the initial signs of MS often led to detours in the health care system, but after being diagnosed, people gained a better understanding of their symptoms with no further need to prove or explain them. The symptoms also seemed to have less impact on their daily lives following diagnosis.

The initial process of being diagnosed with MS was a vulnerable period for people but also posed a significant turning point, as symptoms were identified as having a causal link and could be named. Even though they often had to justify their symptoms to themselves and to HCPs, they were still able to gain an understanding of the disease and its symptoms.

Theme 2: Considering Treatment and How to Disclose MS

Engaging with the health care system and receiving the diagnosis of MS was a life-changing process for people, affecting their integrity and identity; it was also a challenging and vulnerable period in their lives, as they faced decisions about medical treatment and the risk of loneliness when choosing whether and how to disclose their MS.

People associated the period of MS diagnosis with vulnerability and sorrow, but for some, it also brought relief. They recognized that their strange signs were MS symptoms, and their entry into the health care system was unexpected and disruptive. This often contributed to feelings of despair and distress. In addition, the lack of prior knowledge or understanding of MS made many feel lonely. Although some people found solace in attending alone when receiving their diagnosis, others were burdened by the reactions of their relatives: “I knew too well what they were going to tell me. I suspect it was somewhat harder because my parents were accompanying me…. Throughout the process, I’ve been
trying to downplay it towards them because they were incredibly upset.… So I think that at the conversation, I just sat there, trying my best to appear unaffected, and I recall that the first thing I said to them once we’d left the room we were sitting in was, ‘Well, at least I don’t have cancer'” (ID 7). Even though people with MS often withheld their feelings and reactions about their diagnosis to spare their loved ones, these thoughts and concerns were numerous. This further added to the vulnerability that they experienced during their diagnosis.

Although the time from first symptoms to diagnosis could be lengthy, in most cases, people received a DMT quickly upon being diagnosed. The decision regarding medical treatment was made on an individual basis in consultation with HCPs. Some were obviously very concerned about potential adverse effects, whereas others initiated their treatment with full confidence in the neurologist’s recommendations: “I tend to be the type of person who, when my GP tells me, ‘This is what we’re going to do,’ I’m like, ‘That’s fine; you know more about this than I do, so I’m just going to do what you tell me to’” (ID 2).

People with MS trusted the expertise of HCPs and had high expectations that their medical treatment would reduce their symptoms. Additionally, medical advice and guidance influenced treatment decisions. However, the decision-making process often involved multiple concerns about the future, which they felt threatened their integrity and identity and left them particularly vulnerable.

After receiving a diagnosis and starting medical treatment, people learned to live with MS gradually while grappling with the condition’s invisibility and dilemmas about MS disclosure. Some felt that taking medication made their disease more visible, helping them more easily explain their condition. Others found that the invisibility of MS saved them from having to explain things, allowing them to maintain a sense of individuality, particularly in professional settings, given concerns about stigma and performance expectations. This tension between maintaining identity and seeking support for health concerns underscored the complex dynamics of illness disclosure: “I didn’t mention anything about having MS at my workplace. I didn’t tell them I was being investigated because I kept to myself…. And they probably didn’t notice me. I tend to say they’ve seen me when I haven’t been around because there was a void” (ID 6).

Because reactions from people in their everyday environments could either support or threaten their identity and integrity, people with MS had more at stake than simply having to learn how to live with their disease. Equally important was adapting their surroundings to accommodate the challenges posed by MS. HCPs must pay special attention to their patients’ vulnerability due to the invisibility of MS, as it could lead to a feeling of loneliness that might be an extra burden on them.

The subsequent phase of living with MS involved a process of stabilization, prioritization, and adjustment, which fostered hope for the future. During this stage, individuals often found that the disease was less of a burden, allowing new priorities and life goals to emerge, although the emotional journey still occasionally gave rise to existential thoughts. Many continued to grapple with uncertainties about MS progression and development in their daily lives, including potential disabilities and uncertainties surrounding mobility, independence, and quality of life: “The worst thing about the whole thing is the uncertainty of one’s future. No doubt. I mean, will I be in a wheelchair 10 years from now? Where will I end up by then?… Because I’m very much the type who wants to retire before I’m 50…but is it even worth it if I can’t do anything at all? So it does affect me in that I have no idea what the future holds for me” (ID 3).

This uncertainty could lead to anxiety and stress, prompting individuals to reassess their priorities—retirement, financial planning, and personal aspirations—and consider whether they were still right. For instance, they grappled with questions about whether they could achieve their desired experiences at the opportune moment and whether they were living life to the fullest. They thought about potential futures where the disease had progressed to more severe levels: “I think it’s that you are reminded of it when you enter the hospital. And it’s more about realizing that there are people who are clearly worse off than I am. But I still need to go there. So in some way, it weighs on you, doesn’t it? When you have to put yourself in that context” (ID 10).

Despite moments of sadness and apprehension, the interviewees with MS exhibited remarkable resilience and optimism, often finding humor in difficult situations and celebrating small victories. Some emphasized that they could have used age-specific peer support when newly diagnosed, whereas others wanted minimal contact with HCPs and wanted to rely on their families. In the same vein, some focused on living in the present whereas others worried about disease activity and its impact on their future: “Well, it’s a kind of fear, but it’s not that I’ve been anxious about it. I just feel that it means less and less because I can see that nothing is happening. And now I’ve been through 3 scans where they tell me they can’t see anything on the old ones” (ID 10).

As their disease stabilized and they had regular checkups, people with MS felt more certainty and reassurance. They realized that the disease played out differently with different symptoms for each individual. As they became familiar with the disease, they felt a sense of calm as they adapted to living with MS.

Through their diagnosis journey, people with MS gained a new view on life: “Well, at first, when it dawned upon me what it actually was…I felt incredibly sorry for myself for a few weeks. And then I woke up one day and thought to myself, ‘Right. You’ve felt sorry for yourself. This disease isn’t going away. You have to live with it. And you simply have to make the most of it.’ And then you have to look positively at the things that are there” (ID 11).

The journey to effectively managing the disease was challenging and fraught with difficulties. People with MS often found themselves with emotional and physical fragility, experiencing moments of intense hopelessness and despair about their overall quality of life and future prospects. However, after a phase of adapting to their new reality and stabilizing their health, they began to perceive life differently. This new perspective led to a sense of optimism about what lay ahead. Their positive outlook on life thus played a crucial role in allowing them to envision and strive for a brighter future despite their health challenges and life with MS.

Our analysis indicates that people with MS are generally very satisfied with their lives and their MS clinic. What we found interesting is that recognizing and understanding symptoms was challenging for both individuals and the health care system. It is also difficult for people to convey the significance of MS in their daily lives and function to others. Despite these challenges, they find their way, although some also acknowledge great losses.

By exploring the experiences of people with MS, we recognized the complexity outlined in the ICF Core Set for MS.

 Before MS diagnosis, the most noticeable issues for individuals were often related to body functions, including feeling and vision. They also reported pain and symptoms related to muscles and movement. Most of these symptoms are invisible to others, making them difficult to explain and understand. This experience is in line with the findings of Parker et al: There is often a discrepancy between a person’s internal experience of symptoms and what can be objectively observed,

 so individuals try to create a coherent narrative of the symptomatic chaos. Invisible symptoms can create the impression that the person is not sick, which may undermine their own confidence in their symptoms and even discourage them from seeking help, as stated by the Danish MS Society.

 This is also in line with the idea that because MS symptoms are often invisible, people may find that HCPs may disbelieve or dismiss their experiences.

Our findings show that the time around diagnosis is an especially vulnerable period for people with MS to see their bodies as dysfunctional. According to Leder’s “dys-appearing body” concept, the normal and healthy body, which functions like a machine flawlessly and unnoticed in the background of life, often disappears from our consciousness.

 When symptoms first appear, they may be perceived as life altering and fill people with frustration and sorrow. These invisible symptoms require HCPs to acknowledge that their patients have innate knowledge about changes in their bodies. Further, the ability to distinguish between well-being and illness is shaped prior to measurements, as articulated by Jensen.

 Such an appreciative approach requires HCPs to pay attention to what their patients are telling them.

Considering Treatment and How to Disclose MS

When diagnosed, people with MS are in a particularly vulnerable period and need support, care, and closeness from their loved ones. Relationships to both family and HCPs are uniquely important yet very challenging for people managing MS.

 Parker et al found that people with MS felt responsible for teaching their loved ones about their invisible symptoms to earn their support and understanding, posing further stress and psychological demands.

 In line with Blundell Jones et al, we found that MS alters the physical body and affects not only how individuals with MS perceive and relate to themselves but also how others perceive and interact with them.

 Some people with MS experience an inner conflict between the desire to be seen and understood and the wish to remain unchanged to maintain their social roles and identity. Due to the fear of being identified as disabled or pitied, people with MS tend to continue their regular routines, possibly trapping themselves alone with unmet needs, pain and a lack of understanding.

 From a health care perspective, this emphasizes the importance of supporting people with MS and addressing how to disclose the disease to family and others while maintaining one’s identity. To achieve this, a relationship between HCPs and people with MS built on trust is crucial. According to a meta-analysis by Birkhäuer et al, people with MS reported a higher quality of life, fewer symptoms, and more treatment satisfaction when they had more trust in their HCPs.

 Witzig-Brändli et al also found that HCPs and people with MS highlight the advantages of a continuous nurse relationship, especially during the planning of consultations, as this relationship seems to aid in meeting patients’ needs.

 We find that when people with MS become affiliated with an MS clinic, they seem to have faith, and thus trust, in the physician and nurses there. When these relationships are established, they experience a sense of control over their treatment, even though hospital checkups often become a reminder of their MS. Our findings demonstrate that acknowledging and accepting MS as well as managing the impact of the disease require attention, guidance, support, and care from HCPs, as outlined by Delmar,

Our findings stress that people with MS find the disease unpredictable, with a wide range of symptoms and effects on their daily lives. They are also uncertain about treatment effectiveness and their long-term prognosis and struggle with unanswered questions, which aligns with other findings that used ICF Core Sets to identify perceived problems.

 We found that people with MS steadfastly hope that disease activity will be reduced with effective medical treatment, allowing them to maintain cognitive and physical function for as long as possible. This is in line with the international consensus recommendations to improve the diagnosis and management of MS as well as treatment access.

 Giovannoni et al also recommend that people with MS start a DMT quickly and that disease activity be monitored regularly to result in a clear treatment goal aimed at maximizing neurological reserve, cognitive function, and physical function by minimizing disease activity.

 In the early stages of MS, some people experience mild symptoms whereas others face significant challenges from the onset, affecting their physical abilities and daily lives. As described in the ICF Core Sets for MS,

 environmental factors, such as attitudes from family, social networks, and people in positions of authority, also affect people with MS, often leading to social isolation and withdrawal from activities, which the results of other studies have also found.

Being diagnosed with MS shapes one’s life and stresses an awareness of one’s own fragility. For most, an MS diagnosis brings grief and crisis, but we also found that people often make a conscious choice to embrace life rather than see themselves as victims of their circumstances. This is in line with Topcu et al, who find that acceptance facilitates adjustment after MS diagnosis.

 The ICF can also help guide the selection of clinical interventions that contribute to and support the interpersonal strengths of the person with MS.

 A new life begins with MS as a lifelong companion, making the body impossible to ignore. This heightened awareness, despite the pain and sorrow, generates positivity and gratitude. The body becomes noticeable as symptoms emerge, and the diagnosis forces people to confront the possibility of permanent change. People with MS develop resilience and find ways to thrive, despite—and sometimes even because of—the challenges brought on by the disease.

 We found that, over time, individuals came to accept their bodies despite the impact of MS on function and well-being. Moreover, as both Rakhshan et al and Soundy et al have previously found, people with MS not only find hope for their future but also discover new ways to live with an incurable disease.

The people in our study represent 3 different MS clinics, contributing to variation and breadth in the data. However, not all 12 MS clinics in the country are represented due to practical and resource constraints, which may introduce the risk of selection bias. We acknowledge the relatively small sample size and the reliance on self-report, with its inherent risk of recall bias.

Using thematic analysis enabled us to uncover new perspectives, which we consider a methodological strength, but we recognize that the subjectivity inherent in this method can pose interpretative challenges. Nevertheless, our findings offer partially new insights, representing a significant contribution.

Although we consider our findings on patients’ perspectives of living with MS—from first symptoms, through diagnosis, to managing life with the disease—to be relevant beyond the Danish context, our work should be interpreted in the context of the Danish health care system, which generally provides timely and equitable access to diagnosis and treatment. This contrasts with countries relying on private health care or low-income settings, where access is often limited by financial constraints.

In a recent study, Uher et al report an average diagnostic delay of approximately 4 years in Denmark compared with 7 years in the United States.

 In Denmark, this shorter delay is attributed to a well-organized, publicly funded system, efficient referral pathways, and the Danish MS Registry, which supports timely diagnosis and initiation of treatment.

 Conversely, longer delays in, for example, the US are linked to a fragmented system, variable insurance coverage, and limited access to specialist care.

Financial concerns, such as high treatment costs and income loss, also pose barriers for people in the US, and these often result in postponed consultations and delayed diagnosis.

 These challenges are less prominent in Denmark, though socioeconomic disparities still exist.

Such structural and financial factors likely shape the experience of living with MS and should be considered when applying our findings to other health care systems or socioeconomic contexts.

Our study results reveal that people with MS often experience unusual symptoms that are difficult to understand and articulate, both to themselves and to HCPs. Diagnostic complexity leaves many people with MS feeling misunderstood, which can delay treatment initiation and heighten emotional vulnerability. Receiving an MS diagnosis marks a significant turning point, leading to concerns about treatment and disclosure, which can provoke considerable anxiety. However, after a period of stabilization and adjustment, most people report feeling affirmed and grateful for life. They find hope in medical treatment, and trust in HCPs is essential. The complexities involved in diagnosing MS underscore the critical importance of HCPs’ knowledge and recognition of the symptoms, which significantly influence patients’ treatment experiences and their ability to cope with MS.

Effective clinical management of multiple sclerosis is crucial to help people cope with the long-term consequences of the disease.

Navigating Life With Multiple Sclerosis in Denmark: From First Symptoms to Long-Term Management

To improve the quality and standard of care, considerable resources are invested to produce clinical guidelines for multiple sclerosis (MS) management. We aimed to investigate MS clinicians’ use of guidelines and factors that influence use.

Interview guides were developed using Fisher’s framework to assess factors that influence guideline application (categorized as personal, guideline related, and external). Nurses and neurologists experienced in MS health care were recruited through convenience sampling. Semistructured online interviews were conducted from June 2023 to October 2023, and data were analyzed using inductive and deductive methods.

We interviewed 16 MS clinicians (10 nurses, 6 neurologists). Despite most clinicians believing that guidelines can improve consistency, safety, and quality of care, the application of guidelines was highly variable. Participants reported that clinical decision-making in MS management involves integrating guideline recommendations with clinical reasoning while considering patients’ circumstances and preferences, the complex nature of MS, and resource constraints. Personal barriers to guideline application included low awareness and familiarity. Guideline-related barriers included evidence, plausibility, accessibility, layout, and complexity. External barriers included a lack of resources. Facilitators were mostly guideline related, including relevance to local protocols, covering complex treatment or unfamiliar topics, and when guidelines were up to date and credible. Participants suggested various strategies to overcome barriers to guideline use.

Australian MS clinicians reported low awareness and high variability in the application of national and/or international MS guidelines. Clinical practice guidelines should be adaptable to local contexts, accessible, and regularly updated. Multifaceted strategies to better distribute and champion guidelines should be employed.

Yasmine Probst and Darshini Ayton declare that they are people living with multiple sclerosis (MS). Claudia H. Marck, PhD, was funded by a University of Melbourne Momentum fellowship and an MS Australia fellowship (20-216). Yvonne C. Learmonth was funded by an MS Australia fellowship (21-3-053) and the Western Australia Department of Health (WANMA EL 2022). Darshini Ayton is funded by a National Health and Medical Research Council Emerging Leader 1 fellowship (2021-2025; APP1195357). Yasmine Probst was funded by an MS Australia Senior fellowship (21-3-014). All other authors declare no relevant conflicts.

Management of multiple sclerosis (MS) is complex and requires multidisciplinary care. Over 33,000 people live with MS in Australia, and the prevalence is increasing faster than population growth.

 However, although the standard of medical care is generally high in Australia, recent reports conclude that the standard of MS care is variable and impacts health outcomes. For example, 31.5% of people living with MS in Australia lack access to a specialist MS nurse, which is associated with worse health outcomes.

 Further, MS care provision in the Australian Capital Territory was reported to be fragmented, below the standard of recommended care, and lacking multidisciplinary integrated care.

 Other reports of inconsistencies or gaps in MS care include family planning,

 and referral to allied health for symptom and comorbidity management.

 These findings are in line with those of a large study that found that Australian adults received appropriate evidence-based health care in only 57% of health care encounters.

Opportunities to improve the standard and quality of care should be identified to ensure optimal outcomes and health equity for all Australians living with MS. Clinical practice guidelines (hereafter, 

) are designed to improve and maintain standards, effectiveness, and consistency of care; reduce inappropriate care; and reduce geographic variations and other inequities.

 High-quality guidelines are based on rigorous syntheses of best available evidence and expert consensus to support clinical decision-making. The application of guidelines should be viewed through the lens of comprehensive clinical decision-making, considering elements such as professional expertise, patient preferences, and practical feasibility.

The acceptability and uptake of guidelines among MS clinicians remain unclear in Australia, and only limited data exist globally. One Australian study assessed compliance among radiologists with the 2003 Consortium of Multiple Sclerosis Centers MRI diagnostic protocol and found incomplete compliance, potentially leading to incorrect or delayed diagnosis.

 Results from 2 German studies found that although there was an overall high level of agreement among 327 neurologists with the German MS treatment guidelines, many considered them too prescriptive and conservative.

 Findings from a 2024 study identified a large gap between the international MS Brain Health quality standard and its real-world adaptations among 71 German neurologists, many of whom reported that the standard was too ambitious, mostly due to a lack of resources.

Although barriers to MS guideline application are largely unknown, from other clinical areas, we know that barriers are commonly clinician related (such as lack of awareness, agreement, self-efficacy, outcome expectancy) or related to organizational factors such as lack of time and resources.

 Guideline-related barriers are also commonly reported, including shortcomings in validity, format, accessibility (eg, paywall, language barrier), credibility, and usability or specificity.

 Our review of 31 guidelines regarding complementary therapies in MS showed variable methodological quality,

 which may lead to suboptimal implementation. In addition, our systematic review of 19 physical activity guidelines for application by MS clinicians showed that these guidelines rarely specify the actions that clinicians should take, likely hindering application.

 Understanding barriers and facilitators to guideline application is the first step to creating strategies to improve guideline implementation and, ultimately, health outcomes.

Therefore, this study aimed to investigate the extent to which MS clinicians apply treatment guidelines and the barriers and facilitators to application. The study is underpinned by Fisher’s framework, designed to assess factors influencing guideline application, which includes 3 domains: personal/clinician factors, guideline-related factors, and external factors.

This study was a cross-sectional qualitative exploration using online semistructured interviews. The interview guide (See 

which is included as a PDF at the end of this article.) was informed by Fischer et al’s framework,

 tested for content and construct, and refined iteratively by the research team that included clinicians, researchers, and people with lived experience of MS (n=9). Ethics approval was obtained through the University of Melbourne Human Research Ethics Committee (Ethics ID 2023-26508-41004-3). We report our findings using the Consolidated Criteria for Reporting Qualitative Research checklist.

Interviews were conducted by 1 of 3 researchers (I.W-B., junior medical doctor and researcher, female; C.H.M, researcher, female; and Y.C.L, researcher and physiotherapist, female) with relevant training and experience in interviewing for clinical practice and/or qualitative research. There was no established relationship between the interviewer and any participants, and participants did not have knowledge about the interviewer that may have impacted the interview. Although several authors have previously been involved in developing guidelines for MS management, none have any competing interests or biases relevant to this work.

MS clinicians were eligible to participate if they were neurologists or MS nurses currently delivering or overseeing health care for people with MS in Australia in a public and/or private capacity. The sample represents the main clinician groups who deliver MS care in Australia and are the primary target audience of most MS guidelines. Participants were recruited through convenience sampling, including direct emails to clinicians and MS clinics, newsletters and websites of professional bodies and MS societies, online social media, professional contacts of our research team (via email or verbal invitation), and snowballing recruitment.

Researchers conducted one-to-one, semistructured 20- to 40-minute interviews online between June 2023 and October 2023. Interviews were conducted and recorded using an online platform (ie, Zoom or Microsoft Teams, depending on participant preference). Verbal informed consent was obtained at the start of each interview. Transcripts were not returned to participants for comment, but participants were asked to email the interviewer if they had any additional thoughts.

Data were analyzed using an iterative deductive-inductive thematic approach.

 An initial coding tree was created a priori based on the framework by Fischer et al,

 with theme descriptions clarified by Cabana et al.

 Data were first coded deductively according to Fischer et al’s framework and further coded as barriers, facilitators, or preferences and needs. Inductive coding was then performed to create new codes for emerging themes and delete irrelevant codes. Two researchers (I.W-B., C.H.M.) independently coded 3 transcripts, discussed discrepancies to reach consensus and ensure reliability, and then consulted with a third researcher (Y.C.L.) to reach agreement on the draft coding structure. One researcher (I.W.B.) coded the remaining transcripts. We integrated the deductive and inductive coding to identify final themes (

). Exemplar quotes are provided with the participant’s profession and years in specialist practice. Data were managed using NVivo 14 (QSR 14.24.0, 2023).

We interviewed 10 MS nurses and 6 neurologists from public and private settings (11 women and 5 men); 10 had 10 or more years of neurology specialty experience (

 to describe both formal resources developed by a professional body or group of experts (external guidelines) and local hospital or clinic protocols (internal guidelines). The application of external guidelines was highly variable among clinicians and generally lower among neurologists compared with nurses, whereas internal guidelines were more widely used. Barriers and facilitators to guideline application are summarized below and in 

lists strategies proposed by participants to overcome commonly identified barriers.

Awareness and familiarity with guidelines. 

Clinicians were familiar with internal guidelines and protocols produced by their organizations. Most clinicians were also aware of guidelines produced by recognized bodies such as the United Kingdom’s National Institute for Health and Care Excellence (NICE), the Brain Health Initiative, the American Academy of Neurology, and Australian guidelines for treating MS during the COVID-19 pandemic, which were produced by a team of Australian and New Zealand neurologists.

 Clinicians often read new external guidelines at the time of publication, but they rarely returned to them and could not recall specific content, resulting in low familiarity, a major barrier to guideline application (quotations associated with clinician-related factors are available in 

). Experienced clinicians frequently reported relying on their clinical acumen rather than a particular guideline. Inversely, clinicians often reported using guidelines when faced with an unfamiliar or complex clinical scenario or if they did not manage many individuals with MS.

Despite generally agreeing with guideline recommendations on clinical practice, clinicians consistently expressed a strong desire to reserve autonomy in their practice and adapt recommendations to their patients’ contexts and preferences. If clinicians disagreed with the content of the guidelines, this was a strong barrier to application. Disagreement with guideline recommendations was often contextualized within the broader lack of consensus among neurologists, which was attributed to limited data and clinician differences in risk management.

 Most clinicians agreed that guidelines improve patient outcomes and clinical practice. Nurses often remarked that both internal and external guidelines could ensure standard of care, improve consistency in practice, be a part of practice review, provide a foundation on unfamiliar topics, reassure that your practice is evidence based, help with busy workloads, keep all providers up to date, and increase generalists’ comfort levels with the delivery of new therapies. These practice improvements were broadly thought to lead to higher quality care and better safety and health outcomes for patients. However, some neurologists were concerned that when guidelines are out of date or overly conservative, this may adversely affect patient outcomes; this was cited as a major barrier to implementation.

Most clinicians regarded guidelines produced by well-known professional bodies (eg, MS Australia, NICE) as evidence based, which they identified as a facilitator to guideline use.However, clinicians noted variation in reporting of levels of evidence in guidelines, leading to skepticism in the development process, a barrier to adoption(quotations associated with guideline-related factors are available in 

Clinicians perceived external guidelines as often out of date given the fast-moving pace of MS research, particularly in relation to disease-modifying therapies (DMTs)

However, some neurologists trusted that guidelines developed by reputable organizations have established processes for regular (ie, at least annual) updates. Published updates of guidelines were perceived to prompt discussion within clinical teams.

Multiple sclerosis clinicians in Australia report that guideline application can improve standards of care but report varying practices in applying treatment guidelines.

Bruce V. Taylor, PhD

Articles

Latest Updated Articles