Publication
Research Article
Introduction: 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.
Methods: 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.
Results: 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.
Conclusions: 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.
From the Department of Neurology and the Research Unit in Neurology, University Hospital of Southern Denmark, Esbjerg, Denmark (LPB, TS, LSM); Department for Applied Health Science, University College Southern Denmark, Esbjerg, Denmark (CM, BBN); and the Department of Regional Health Research, University of Southern Denmark, Odense, Denmark (TS, LSM). Correspondence: Louise Parker Buch, MSc, University Hospital of Southern Denmark, Finsensgade 35, 6700 Esbjerg, Denmark; email: Louise.Parker.Buch@rsyd.dk.N
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.1 MS causes various serious symptoms such as blurred vision, weak limbs, tingling sensations, and fatigue.2 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.3 Early diagnostics and initiation of disease-modifying therapy (DMT) are crucial to reduce disease activity and to foster a better long-term prognosis.4 An additional key aspect of effective treatment is how people with MS are cared for and how well they adhere to their treatment.5
Denmark offers free health care designed to deliver high-quality, timely treatment to all citizens.6 The general practitioner (GP) is responsible for referrals to specialist providers.6 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.7 However, there are limited data regarding patient perspectives and patient-reported outcomes for use in clinical care.8 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.2 This unpredictability significantly impacts quality of life for individuals with MS and their families.2 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.9-12 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 population13 and a growing body of evidence suggesting that understanding individual experiences can support adjustment to life with an MS diagnosis.14-17 As social and cultural contexts may limit how broadly previous findings can be applied, further research is needed to explore experiences within specific settings.16 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.
Study Design
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.18,19 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.
Ethics
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).
Setting and Participants
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.
Data Collection
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. Table 1 presents participant demographics.
Table 1. Participant Demographics (N=13)
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.12,20 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. Table 2 presents the entire interview guide.
Data Analysis and Interpretation
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.21,22 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.
Theme 3: Living Hopefully With MS
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.
Understanding and Proving Symptoms
By exploring the experiences of people with MS, we recognized the complexity outlined in the ICF Core Set for MS.12 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,23 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.24 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.23
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.25 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.26 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.12 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.23 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.27 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.23 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.28 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.29 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,30 but disclosure remains a concern.
Living Hopefully With MS
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.31 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.32 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.32 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,12 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.33
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.14 The ICF can also help guide the selection of clinical interventions that contribute to and support the interpersonal strengths of the person with MS.34 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.35 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.10,11
Strengths and Limitations
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.15,16 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.36 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.37,38 Conversely, longer delays in, for example, the US are linked to a fragmented system, variable insurance coverage, and limited access to specialist care.36,39 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.15,16 These challenges are less prominent in Denmark, though socioeconomic disparities still exist.40 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.
Acknowledgments: 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.
Financial Disclosures: 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.
Prior Presentation: Our research methods were presented at the Nordic Conference in Nursing Research; October 4, 2024; Stockholm, Sweden.
GBD 2021 Nervous System Disorders Collaborators. Global, regional, and national burden of disorders affecting the nervous system, 1990-2021: a systematic analysis for the Global Burden of Disease Study 2021. Lancet Neurol. 2024;23(4):344-381. doi:10.1016/s1474-4422(24)00038-3
Atlas of MS. 3rd ed. MS International Federation. 2020. Accessed May 13, 2024. https://www.msif.org/resource/atlas-of-ms-2020/
Number of people with MS. Atlas of MS. Accessed May 13, 2024. https://www
.atlasofms.org/map/global/epidemiology/number-of-people-with-ms
Roar M, Nielsen ARH, Berg JM, et al. Discontinuation of dimethyl fumarate in multiple sclerosis - a nationwide study. Mult Scler Relat Disord. 2023;80:105127. doi:10.1016/j.msard.2023.105127
Sejbaek T, Nybo M, Petersen T, Illes Z. Real-life persistence and tolerability with dimethyl fumarate. Mult Scler Relat Disord. 2018;24:42-46. doi:10.1016/j.msard.2018.05.007
Sundhedsvæsenet. Indenrigs- og Sundhedsministeriet. Updated September 23, 2024. Accessed September 30, 2024. https://www.ism.dk/sundhed/sundhedsvaesenet
Why registries? Danish Multiple Sclerosis Registry. Accessed August 30, 2024. https://dmsr.dk/why-registries.html
Westergaard K, Skovgaard L, Magyari M, Kristiansen M. Patient perspectives on patient-reported outcomes in multiple sclerosis treatment trajectories: a qualitative study of why, what, and how? Mult Scler Relat Disord. 2022;58:103475. doi:10.1016/j.msard.2021.103475
Javed A, Herrman H. Involving patients, carers and families: an international perspective on emerging priorities. BJPsych Int. 2017;14(1):1-4. doi:10.1192/s2056474000001550
Rakhshan M, Ganjalivand S, Zarshenas L, Majdinasab N. The effect of collaborative care model-based intervention on hope in caregivers and patients with multiple sclerosis: a randomized controlled clinical trial. Int J Community Based Nurs Midwifery. 2018;6(3):218-226.
Soundy A, Benson J, Dawes H, Smith B, Collett J, Meaney A. Understanding hope in patients with multiple sclerosis. Physiotherapy. 2012;98(4):344-350. doi:10.1016/j.physio.2011.05.003
Coenen M, Cieza A, Freeman J, et al; Members of the Consensus Conference. The development of ICF Core Sets for multiple sclerosis: results of the International Consensus Conference. J Neurol. 2011;258(8):1477-1488. doi:10.1007/s00415-011-5963-7
Trénel P, Boesen F, Skjerbæk AG, Petersen T, Rasmussen PV, Nørgaard M. Shedding light on the black box of rehabilitation: differential short- and long-term effects of multidisciplinary multiple sclerosis rehabilitation. Int J MS Care. 2024;26(Q3):224-232. doi:10.7224/1537-2073.2022-071
Topcu G, Mhizha-Murira JR, Griffiths H, et al. Experiences of receiving a diagnosis of multiple sclerosis: a meta-synthesis of qualitative studies. Disabil Rehabil. 2023;45(5):772-783. doi:10.1080/09638288.2022.2046187
Desborough J, Brunoro C, Parkinson A, et al. ‘It struck at the heart of who I thought I was’: a meta-synthesis of the qualitative literature examining the experiences of people with multiple sclerosis. Health Expect. 2020;23(5):1007-1027. doi:10.1111/hex.13093
Mehraban S, Bahmani B, Boukani SA, Toosi M, Karami M, Carnero Contentti E. Patients experiences when receiving diagnosis of multiple sclerosis: a qualitative systematic review. Mult Scler Relat Disord. 2023;69:104473. doi:10.1016/j.msard.2022.104473
Graziano F, Calandri E, Borghi M, Giacoppo I, Verdiglione J, Bonino S. Multiple sclerosis and identity: a mixed-methods systematic review. Disabil Rehabil. 2025;47(9):2199-2216. doi:10.1080/09638288.2024.2392039
Braun V, Clarke V. Thematic analysis. In: Cooper H, Coutanche MN, McMullen LM, Panter AT, Rindskopf D, Sher KJ, eds. APA Handbook of Research Methods in Psychology, Volume 2: Research Designs: Quantitative, Qualitative, Neuropsychological, and Biological. 2nd ed. American Psychological Association; 2023. Accessed August 28, 2024. https://psycnet.apa.org/record/2023-78956-004
Braun V, Clarke V. Toward good practice in thematic analysis: avoiding common problems and be(com)ing a knowing researcher. Int J Transgend Health. 2023;24(1):1-6. doi:10.1080/26895269.2022.2129597
How to Use the ICF: A Practical Manual for Using the International Classification of Functioning, Disability and Health (ICF). World Health Organization. October 1, 2013. Accessed August 28, 2024. https://www.who.int/publications/m/item/how-to-use
-the-icf---a-practical-manual-for-using-the-international-classification-of-functioning-disability-and-health
Braun V, Clarke V. Thematic Analysis: A Practical Guide. Sage Publications; 2022
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77-101. doi:10.1191/1478088706qp063oa
Parker LS, Topcu G, De Boos D, das Nair R. The notion of “invisibility” in people’s experiences of the symptoms of multiple sclerosis: a systematic meta-synthesis. Disabil Rehabil. 2021;43(23):3276-3290. doi:10.1080/09638288.2020.1741698
But you look so good! National Multiple Sclerosis Society. 2016. Accessed September 4, 2024. https://cdn.sanity.io/files/y936aps5/production
/c1eb2e85aea829f3b911fcc585fa62cb33b36e02.pdf
Leder D. The Absent Body. University of Chicago Press; 1990.
Jensen UJ. Patientperspektivet i en sundhedspraksis under forandring. In: Martinsen B, Norlyk A, Dreyer P, eds. Patientperspektivet: En kilde til viden. Munksgaard; 2012:17-30.
Blundell Jones J, Walsh S, Isaac C. The relational impact of multiple sclerosis: an integrative review of the literature using a cognitive analytic framework. J Clin Psychol Med Settings. 2017;24(3-4):316-340. doi:10.1007/s10880-017-9506-y
Birkhäuer J, Gaab J, Kossowsky J, et al. Trust in the health care professional and health outcome: a meta-analysis. PLoS One. 2017;12(2):e0170988. doi:10.1371/journal.pone.0170988
Witzig-Brändli V, Lange C, Gschwend S, Kohler M. “I would stress less if I knew that the nurse is taking care of it”: multiple sclerosis inpatients’ and health care professionals’ views of their nursing-experience and nursing consultation in rehabilitation-a qualitative study. BMC Nurs. 2022;21(1):232. doi:10.1186/s12912-022-01013-x
Delmar C. Det faglige skøn: En kernekvalifikation i klinisk beslutningstagen. In: Røjgaard Nielsen BF, Barbesgaard H, eds. Klinisk beslutningstagen: Sygeplejefaglige perspektiver. FADL’s Forlag; 2019:17-32.
Leonardi M, Bickenbach J, Ustun TB, Kostanjsek N, Chatterji S; MHADIE Consortium. The definition of disability: what is in a name? Lancet. 2006;368(9543):1219-1221. doi:10.1016/s0140-6736(06)69498-1
Giovannoni G, Butzkueven H, Dhib-Jalbut S, et al. Brain health: time matters in multiple sclerosis. Mult Scler Relat Disord. 2016;9(suppl 1):S5-S48. doi:10.1016
/j.msard.2016.07.003
Karhula ME, Kanelisto KJ, Ruutiainen J, Hämäläinen PI, Salminen AL. The activities and participation categories of the ICF Core Sets for multiple sclerosis from the patient perspective. Disabil Rehabil. 2013;35(6):492-497. doi:10.3109/09638288.2012.702845
Dorstyn D, Black R, Mpofu E, Kneebone I. Utilizing the ICF to understand depressive symptomology in multiple sclerosis: an exploratory systematic review. Rehabil Psychol. 2017;62(2):143-164. doi:10.1037/rep0000125
Leder D. The Healing Body: Creative Responses to Illness, Aging, and Affliction. Northwestern University Press; 2023.
Uher T, Adzima A, Srpova B, et al. Diagnostic delay of multiple sclerosis: prevalence, determinants and consequences. Mult Scler. 2023;29(11-12):1437-1451. doi:10.1177/13524585231197076
Wandall-Holm MF, Buron MD, Kopp TI, Thielen K, Sellebjerg F, Magyari M. Time to first treatment and risk of disability pension in relapsing-remitting multiple sclerosis. J Neurol Neurosurg Psychiatry. 2022;93(8):858-864. doi:10.1136/jnnp-2022-329058
Magyari M, Joensen H, Laursen B, Koch-Henriksen N. The Danish Multiple Sclerosis Registry. Brain Behav. 2021;11(1):e01921. doi:10.1002/brb3.192
Solomon AJ, Marrie RA, Viswanathan S, et al. Global barriers to the diagnosis of multiple sclerosis: data from the Multiple Sclerosis International Federation Atlas of MS, third edition. Neurology. 2023;101(6):e624-e635. doi:10.1212/wnl.0000000000207481
Lynning M. Adgang til sundhedsydelser for personer med sclerose i Danmark. Scleroseforeningen; 2024.
