Advanced Stages Of Multiple Sclerosis Research Articles

The Palliative Care Needs of Patients with Multiple Sclerosis, Parkinson's Related Diseases, and Motor Neurone Disease: A Secondary Analysis of the OPTCARE Neuro Trial Data.

Background: Long-term neurological conditions include multiple sclerosis, Parkinson's-related diseases, and motor neurone disease. National and international guidelines recommend a palliative approach for advancing neurological disease, but there is little research describing and comparing the palliative care needs of these patients side by side. Objective: The aim of this study was to describe and compare the symptom burden and psychological distress of patients with multiple sclerosis, Parkinson's-related diseases, and motor neurone disease. Design: A cross-sectional secondary analysis of the OPTCARE Neuro trial data was performed. Setting/Subjects: Recruitment was from seven sites across the United Kingdom. Patients aged 18 years or older, severely affected by advanced stages of multiple sclerosis or Parkinson's-related diseases or any stage of motor neurone disease, with an unresolved symptom, and one other issue despite usual care were eligible. Measurements: Baseline demographics, Integrated Palliative care Outcome Scale (IPOS) Neuro, and Hospital Anxiety and Depression Scale (HADS) results were analyzed. Results: Data from 348 participants were analyzed. The mean IPOS Neuro-S24 score was 27, with no statistical difference found between groups (p = 0.341). The most common symptoms were poor mobility (68.5%), problems using legs (63%), and fatigue (34.8%). The HADS revealed that a quarter of participants met the criteria for a diagnosis of anxiety and depression. Conclusions: Multiple sclerosis, Parkinson's-related disease, and motor neurone disease patients who were eligible for the OPTCARE Neuro trial have unmet needs in the form of distressing physical and psychological symptoms. It is unclear how to address these needs. The answer likely lies in a collaborative approach between neurology, palliative care, psychology, and specialized allied health professionals. Future work should focus on investigating this.

Stages of brain volume loss and performance in the Brief International Cognitive Assessment for Multiple Sclerosis

BackgroundCognitive dysfunction occurs in a substantial proportion of patients with multiple sclerosis (MS), negatively affects their daily activities, and is associated with poor prognosis. Cognitive dysfunction in MS can extend across multiple cognitive domains, depending on the patterns and extent of the brain regions affected. Therefore, a combination of tests, including the Brief International Cognitive Assessment for MS (BICAMS), that assess different aspects of cognition is recommended to capture the full picture of cognitive impairment in each patient. However, the temporal relationships between the progression of the MS brain pathology and the performances in different cognitive tests remain unclear. MethodsGlobal and regional brain volume data were obtained based on T1-weighted magnetic resonance imaging from 61 patients with MS, and hierarchical cluster analysis was performed using these brain volume data. Cognitive function was assessed using the three subcomponents of the BICAMS: the Symbol Digit Modalities Test (SDMT), California Verbal Learning Test Second Edition (CVLT2), and Brief Visuospatial Memory Test-Revised (BVMTR). Clinical characteristics, patterns of regional brain volume loss, and cognitive test scores were compared among clusters. ResultsCluster analysis of the global and regional brain volume data classified patients into three clusters (Clusters 1, 2, and 3) in order of decreasing global brain volume. A comparison of the clinical profiles of the patients suggested that those in Clusters 1, 2, and 3 are in the early, intermediate, and advanced stages of MS, respectively. Pair-wise analysis of regional brain volume among the three clusters suggested brain regions where volume loss starts early and continues throughout the disease course, occurs preferentially at the early phase, or evolves relatively slowly. SDMT scores differed significantly among the three clusters, with a decrease from Clusters 1 to 3. BVMTR scores also declined in this order, whereas the CVLT2 was significantly impaired only in Cluster 3. ConclusionOur results suggest that SDMT performance declines in conjunction with brain volume loss throughout the disease course of MS. Performance in the BVMTR also declines in line with the brain volume loss, but impairment in the CVLT2 becomes particularly apparent at the late phase of MS.

Nutritional status in patients with advanced-stage multiple sclerosis.

Motor and swallowing dysfunctions in multiple sclerosis (MS) unbalance calorie intake and energy expenditure, modifying nutritional status. Only one study has described nutritional status in MS patients at early disease stages (median Expanded Disability Status Scale [EDSS]=3), but this has never been assessed in the most severe cases. The goal of the present study was to describe nutritional status in advanced-stage MS. The study was a non-interventional retrospective analysis of a prospective registry. We reviewed medical files of consecutive MS patients admitted for annual follow-up in a physical and rehabilitation medicine unit between May 2016 and October 2018. Malnutrition for frail people, according to the French Health Authority (Haute Autorité de Santé [HAS]) definition, was our composite primary outcome criterion: body mass index (BMI) <21kg/m2 and/or albumin<35g/L. First, we performed a descriptive analysis of the nutritional status. Second, we studied the association between malnutrition and MS characteristics in univariate and multivariate analyses. A total of 163 patients with median EDSS=8 [7; 8.5] were included. Ninety-three patients (57%) met HAS malnutrition criteria (36% with albumin <35g/L, 31% with BMI <21kg/m2 and 10% with both). Malnutrition was associated in univariate analysis with MS severity (EDSS ≥8.5, p=0.0003), primary progressive type of MS (p=0.01) and swallowing disorders (p=0.002). Multivariate analysis showed that low disability status (EDSS <7) was the only independent (protective) factor associated with malnutrition (OR=0.2, p=0.03). Malnutrition is frequent in advanced stages of MS and is probably a key point for therapeutics, which has never been demonstrated previously. A standardized evaluation should be developed to improve nutritional therapeutic strategies in this population.

MiR-132-3p, miR-106b-5p, and miR-19b-3p Are Associated with Brain-Derived Neurotrophic Factor Production and Clinical Activity in Multiple Sclerosis: A Pilot Study.

Introduction: Brain-derived neurotrophic factor (BDNF) levels are reduced in advanced stages of multiple sclerosis (MS) and may be associated with reduced regenerative capability in progressive MS. This has brought increased attention to factors regulating BDNF production in MS. Our aim was to investigate the link between neurotrophin-regulating microRNAs (miRNA) and disease progression in MS. Materials and Methods: Serum levels of BDNF and peripheral blood mononuclear cell (PBMC) expression levels of miR-132-3p, miR-106b-5p and miR-19b-3p were respectively measured by ELISA and real time PCR in twelve relapsing remitting MS (RRMS) patients, seven secondary progressive MS (SPMS) patients and fourteen healthy controls. Results: Serum BDNF levels were significantly reduced in SPMS patients, while selected miRNAs were significantly upregulated in PBMC of RRMS and SPMS patients. miR-106b-5p and miR-19b-3p respectively showed the highest sensitivity and specificity for MS diagnosis by receiver operating characteristic curve analysis. There was a negative correlation between levels of BDNF and the miRNAs in RRMS. Likewise, levels of BDNF and the investigated miRNAs showed positive and negative correlations respectively with the expanded disability status scale in RRMS and SPMS patients. miR-132-3p and miR-106b-5p levels showed positive correlations with the progression index in SPMS patients. Conclusion: Our results suggest that increased disability is associated with downregulation of miR-132-3p, miR-106b-5p and miR-19b-3p in RRMS patients and putatively promotes increased production of neuroprotective BDNF as a compensatory mechanism. This link between the investigated miRNAs and BDNF in RRMS does not appears to hold for SPMS. This might be one of the factors contributing to reduced regenerative ability in the progressive stage of MS.

Dying with Dignity: The Role of Dignity in the Irish Constitution and its Implications for the Prohibition of Assisted Suicide

‘As there is no right to commit suicide, issues such as discrimination do not arise; nor do values such as dignity… apply to the situation… of the appellant.’ It might come as a surprise to see the role of dignity in a Supreme Court decision on assisted suicide reduced to a sweeping one-line statement of non-applicability. In Fleming v Ireland Marie Fleming, a woman in the advanced stages of multiple sclerosis (MS), challenged the constitutionality of the ban on assisted suicide in Ireland. The Supreme Court, in denying that any of her constitutional rights were engaged, failed to analyse the compatibility of this ban with the value of human dignity protected by the Irish Constitution. This paper argues that the failure to accord dignity a central place in considering the constitutionality of the ban on assisted suicide is attributable to the absence of a coherent conception of the role of dignity in Irish constitutional law. It analyses the case law on dignity and draws from it a coherent framework for the role of dignity, suggesting a consistent approach for the courts to take in cases engaging human dignity. The need for such a coherent approach to dignity is clear as this value is referred to more and more in recent Irish constitutional cases, and as social issues fundamentally affecting individuals’ human dignity such as assisted suicide, become more and more pressing. Understanding the role to be accorded to dignity in considering the constitutional implications of such issues will ensure that no one’s human dignity is overlooked in cases which affect it, as well as bringing much-needed consistency to the jurisprudence in this area. This paper then discusses the implications which dignity, when accorded its proper place in constitutional analysis, has for the absolute ban on assisted suicide in Irish criminal law. It argues that this blanket prohibition violates the gravely ill individual’s right to dignity and a number of other personal rights read in the light of dignity, and is therefore unconstitutional.

The Dresden Protocol for Multidimensional Walking Assessment (DMWA) in Clinical Practice.

Walking impairments represent one of the most debilitating symptom areas for people with multiple sclerosis (MS). It is important to detect even slightest walking impairments in order to start and optimize necessary interventions in time to counteract further progression of the disability. For this reason, a regular monitoring through gait analysis is highly necessary. At advanced stages of MS with significant walking impairment, this assessment is also necessary to optimize symptomatic treatment, choose the most suitable walking aid and plan individualized rehabilitation. In clinical practice, walking impairment is only assessed at higher levels of the disease using e.g., the Expanded Disability Status Scale (EDSS). In contrast to the EDSS, standardized functional tests such as walking speed, walking endurance and balance as well as walking quality and gait-related patient-reported outcomes allow a more holistic and sensitive assessment of walking impairment. In recent years, the MS Center Dresden has established a standardized monitoring procedure for the routine multidimensional assessment of gait and balance disorders. In the following protocol, we present the techniques and procedures for the analysis of gait and balance of people with MS at the MS Center Dresden. Patients are assessed with a multidimensional gait analysis at least once a year. This enables long-term monitoring of walking impairment, which allows early active intervention regarding further progression of disease and improves the current standard clinical practice.

Effect of Short-term Integrated Palliative Care on Patient-Reported Outcomes Among Patients Severely Affected With Long-term Neurological Conditions

Palliative care has shown benefits in reducing symptom intensity and quality of life in patients with advanced cancer. However, high-quality evidence to support palliative care policy and service developments for patients with long-term neurological conditions (LTNCs) is lacking. To determine the effectiveness of a short-term integrated palliative care (SIPC) intervention for people with LTNCs. Multicenter, phase 3, randomized clinical trial conducted from April 1, 2015, to November 30, 2017, with a last follow-up date of May 31, 2018, in 7 UK hospitals with both neurology and palliative care services. A total of 535 patients with LTNC were assessed for eligibility and 350 were randomized. Inclusion criteria were patients 18 years or older with any advanced stage of multiple sclerosis, motor neuron disease, idiopathic Parkinson disease multiple system atrophy, or progressive supranuclear palsy. Data were analyzed from November 2018 to March 2019. Patients were randomized 1:1 using minimization method to receive SIPC (intervention, n = 176) or standard care (control, n = 174). Primary outcome was change in 8 key palliative care symptoms from baseline to 12-weeks, measured by the Integrated Palliative care Outcome Scale for neurological conditions. Secondary outcomes included change in the burden of other symptoms, health-related quality of life, caregiver burden, and costs. Data were collected and analyzed blindly by intention to treat. A total of 350 patients (mean [SD] age 67 [12] years; years since diagnosis, 12 [range, 0-56]; 51% men; 49% requiring considerable assistance) with an advanced stage of LTNC were recruited, along with informal caregivers (n = 229). There were no between-group differences in primary outcome (effect size, -0.16; 95% CI, -0.37 to 0.05), any other patient-reported outcomes, adverse events, or survival. Although there was more symptom reduction in the SIPC group in relation to mean change in primary outcome, the difference between the groups was not statistically significant (-0.78; 95% CI, -1.29 to -0.26 vs -0.28; 95% CI, -0.82 to 0.26; P = .14). There was a decrease in mean health and social care costs from baseline to 12 weeks -$1367 (95% CI, -$2450 to -$282) in the SIPC group and -653 (95% CI, -$1839 to -$532) in the control group, but this difference was not statistically significant (P = .12). SIPC was perceived by patients and caregivers as building resilience, attending to function and deficits, and enabling caregivers. In this study, SIPC was not statistically significantly different from standard care for the patient-reported outcomes. However, SIPC was associated with lower cost, and in qualitative analysis was well-received by patients and caregivers, and there were no safety concerns. Further research is warranted. isrctn.org Identifier: ISRCTN18337380.

Alterations of the gut ecological and functional microenvironment in different stages of multiple sclerosis

Multiple sclerosis (MS), an autoimmune disease of the central nervous system, generally starts as the relapsing remitting form (RRMS), but often shifts into secondary progressive MS (SPMS). SPMS represents a more advanced stage of MS, characterized by accumulating disabilities and refractoriness to medications. The aim of this study was to clarify the microbial and functional differences in gut microbiomes of the different stages of MS. Here, we compared gut microbiomes of patients with RRMS, SPMS, and two closely related disorders with healthy controls (HCs) by 16S rRNA gene and whole metagenomic sequencing data from fecal samples and by fecal metabolites. Each patient group had a number of species having significant changes in abundance in comparison with HCs, including short-chain fatty acid (SCFA)-producing bacteria reduced in MS. Changes in some species had close association with clinical severity of the patients. A marked reduction in butyrate and propionate biosynthesis and corresponding metabolic changes were confirmed in RRMS compared with HCs. Although bacterial composition analysis showed limited differences between the patient groups, metagenomic functional data disclosed an increase in microbial genes involved in DNA mismatch repair in SPMS as compared to RRMS. Together with an increased ratio of cysteine persulfide to cysteine in SPMS revealed by sulfur metabolomics, we postulate that excessive DNA oxidation could take place in the gut of SPMS. Thus, gut ecological and functional microenvironments were significantly altered in the different stages of MS. In particular, reduced SCFA biosynthesis in RRMS and elevated oxidative level in SPMS were characteristic.

Cognitive and Psychiatric Events in Multiple Sclerosis: Could they Be the First Signs?

Background: Cognitive and psychiatric abnormalities are frequently observed in advanced stages of multiple sclerosis (MS). Despite its high prevalence, whether these manifestations may represent the first signs of MS is still debatable. We report two cases of MS with dementia and psychiatric disorders as presenting symptoms.

Early P2X7R-dependent activation of microglia during the asymptomatic phase of autoimmune encephalomyelitis

Microglia-mediated neuroinflammation accompanies many central nervous system (CNS) diseases, including multiple sclerosis (MS), and is strongly dependent on the purinergic P2X7 receptor. The nature of the inflammatory response in MS is studied for decades indicating, that proinflammatory microgliosis is involved in advanced stages of MS and is associated with active tissue damage and neurological dysfunctions. Evidence on the role of microgliosis in initial stages of the disease is scarce. Thus, in the present study, we investigated the time course of microglial activation in rat brain subjected to experimental autoimmune encephalomyelitis (EAE) which is the animal model of MS. We show that activation of microglia occurs in brains of immunized rats at a very early stage of EAE, well before the development of neurological symptoms of the disease. Enhanced immunoreactivity of microglia/macrophage-specific protein Iba-1, together with morphological features of microgliosis, was identified beginning at day 4 post immunization. Concomitantly, microglial expression of P2X7R was also examined. Moreover, our results reveal that administration of Brilliant Blue G, an antagonist of P2X7R, delays the onset of the disease and partially inhibits development of neurological symptoms in EAE rats. Blockage of P2X7R significantly reduces activation of microglia as confirmed by decreased Iba-1 immunoreactivity and suppresses neuroinflammation in EAE rat brains, as indicated by decreased protein levels of investigated proinflammatory cytokines: IL-1β, IL-6 and TNF-α. Our results indicate that microglia are involved in inducing neuroinflammation at a very early stage of MS/EAE via a P2X7R-dependent mechanism.

Dementia Revealing Multiple Sclerosis

Cognitive abnormalities are frequently observed in advanced stages of Multiple Sclerosis (MS). Their frequency increases from clinically isolated syndromes, to relapsing-remitting and secondary progressive MS. The most frequently impaired functions are information processing speed, attention and memory. Dementia is uncommon but may reveal a MS. We reported a 47-year-old woman suffering since 8 months of headache with a progressive amnesia, temporospatial disorientation and behavioral disorders. On examination, we found dementia syndrome and a frontal syndrome. Brain MRI showed a T2 hyperintensity multifocal ovoid lesions with enhancement in the periventricular white matter and in the corpus callosum. Diagnostic hypotheses were ADEM or MS. Isoelectric focusing revealed oligoclonal bands and elevated IgG index. She was treated with intravenous methylprednisolone 1 g daily for five consecutive days. There was a regression of the symptomatology but 4 months after diagnosis, the patient presented with a postural instability, gait difficulty, terminal intention tremor and dysmetria. A diagnosis MS was considered and she was given interferon. The concept of MS being a dementing illness is not novel. Neurologists are well aware that patients with MS may present with cognitive impairment. But the fact that this disease is revealed by dementia is rare and new.

Clinical and Demographic Profile of Patients Receiving Fingolimod in Clinical Practice in Germany and the Benefit\u2013Risk Profile of Fingolimod After 1 Year of Treatment: Initial Results From the Observational, Noninterventional Study PANGAEA

The population with multiple sclerosis receiving treatment in clinical practice differs from that in randomized controlled trials (RCTs). An assessment of the real-world benefit–risk profile of therapies is needed. This analysis used data from the large, noninterventional, observational German study Post-Authorization Non-interventional German sAfety study of GilEnyA (PANGAEA) to assess prospectively baseline characteristics and outcomes after 12 months (± 90 days) of fingolimod treatment. Patients were divided into 2 cohorts: fingolimod starter [first received fingolimod in PANGAEA (n = 3315)] and previous study [received fingolimod before enrollment in PANGAEA in RCTs (n = 875), some of whom also had baseline data at entry into RCTs (n = 505)]. At PANGAEA baseline, patients in the fingolimod starter versus the previous study cohort had a higher annualized relapse rate [ARR (95% confidence interval): 1.79 (1.75–1.83) vs 1.32 (1.25–1.40)] and Expanded Disability Status Scale score [3.11 (3.04–3.17) vs 2.55 (2.44–2.66)]. A greater proportion in the fingolimod starter versus previous study cohort had diabetes (2.0% vs 0.7%). After 12 months of fingolimod, ARRs were lower than in the 12 months before PANGAEA enrollment in the fingolimod starter [0.386 (0.360–0.414)] and previous study [0.276 (0.238–0.320)] cohorts. Expanded Disability Status Scale scores were stable versus baseline. Adverse events were experienced by similar proportions in both cohorts during fingolimod treatment. Relevant differences exist in disease activity and comorbidities between patients receiving fingolimod in clinical practice versus RCTs. Irrespective of baseline differences indicating a higher proportion at an advanced stage of multiple sclerosis in the real world versus RCTs, fingolimod remains effective, with a manageable safety profile.

Development of a gaze-controlled support system for a person in an advanced stage of multiple sclerosis

Development of a gaze-controlled support system for a person in an advanced stage of multiple sclerosis

Development of a gaze-controlled support system for a person in an advanced stage of multiple sclerosis: a case study

A gaze-controlled system was developed to address the specific needs of a person in an advanced stage of Multiple Sclerosis. This patient scored 9 on the EDSS and is representative of a group of patients who can reason normally, but have no functional use of their upper-limbs. The developer and the patient were connected through remote desktop control and could brainstorm a concept to perfection through iterative trial and error. The most important lesson learnt is the importance of user control towards maximum independence. Eventually, the patient was enabled to control his computer efficiently using a novel approach to mouse control together with an on-screen keyboard. He could browse the internet, read e-books, type documents, send and receive e-mails and text messages, draw in a paint application and control his TV through a specially adapted remote control—all by using his eyes to activate commands. The findings suggest that a well-designed eye tracking system can fulfil in the mental and communication needs of patients in this specific category of disability.

Association between the use of selective serotonin reuptake inhibitors and multiple sclerosis disability progression.

Benefits of selective serotonin reuptake inhibitors (SSRIs) in modifying the multiple sclerosis (MS) disease course have been suggested, but their ability to delay disability progression remains unknown. We examined the association between SSRI exposure and MS disability progression. A nested case-control study was conducted using the British Columbia (Canada) Multiple Sclerosis clinical data linked to health administrative data. The primary outcome was a sustained score of 6 (requires a cane to walk) on the Expanded Disability Status Scale (EDSS), and the secondary outcome was the onset of secondary progressive MS (SPMS, an advanced stage of MS). The cases were those who reached a study outcome and were matched with up to four randomly selected controls by sex, age, EDSS and calendar year at study entry using incidence density sampling. The associations between disability worsening and SSRI exposure were assessed with conditional logistic regression models, adjusted for confounders. A total of 3920 patients were included in the main analyses, of which 272 reached sustained EDSS 6 and 187 reached SPMS. SSRI exposure was significantly different between patients who reached sustained EDSS 6 and controls [adjusted odds ratio (adjOR):1.44; 95% confidence interval (CI):1.03-2.01]. However, SSRI exposure was not significantly different between those who reached SPMS and their controls (adjOR:1.35; 95%CI:0.89-2.04). We found no evidence to suggest that SSRI exposure was associated with a delay in MS disability accumulation or progression. Copyright © 2016 John Wiley & Sons, Ltd.

Palliative Care in Polish Patients with Multiple Sclerosis

Multiple sclerosis is a progressive disease of the central nervous system with unknown aetiology. It most frequently affects young adults and inevitably leads to disability. Despite significantly progressing development of immunomodulatory treatment, access to which in Poland is limited, the number of patients requiring continuous care and being unable to live independently is constantly growing. The specificity of MS symptoms results from damage of almost all functional systems of the nervous system. The physical, mental, cognitive and psychosocial consequences associated with the symptoms significantly decrease the patients' quality of life. Patients with advanced stage of multiple sclerosis actually qualify for palliative care, which in Poland is reserved mainly for oncological patients and rarely for other groups of patients. The Polish legal system does not provide guaranteed benefits for people with MS requiring palliative and hospice care. Therefore, it is necessary to take action aimed at supporting the most disabled patients who are deprived of the modifying treatment and are only left to symptomatic treatment.

Thrombotic processes in multiple sclerosis as manifestation of innate immune activation.

Multiple sclerosis (MS) is a chronic demyelinating inflammatory disease of the central nervous system (CNS) affecting prevalently young adults (1, 2). The pathogenesis of MS has long been attributed to self-reactive T cells but recently the relevant role of B cells has also been recognized (2, 3). Furthermore, it has been demonstrated that innate immunity has a pivotal role in the beginning and in advanced stages of MS (4–6). Innate immunity represents the immediate non-specific defense against infections and dangerous agents acting through its essential arms such as inflammation and blood coagulation (7–10). The coagulant processes are normally balanced by the natural anti-coagulant system needed to limit the host damage, and their imbalance leads to venous thrombosis (7, 8). Many evidences reported below support a significant presence of local and systemic thrombotic events in MS confirming the global over-stimulation of innate immunity for both its inflammatory and coagulant components.

Concentration of 25(OH)D3 and calcium and phosphorus metabolism in patients suffering from relapsing-remitting multiple sclerosis. A pilot study

Background and purposeThe aim of this study was to evaluate the concentration of 25(OH)D3 and the indices of calcium and phosphorus metabolism at different times of relapsing-remitting multiple sclerosis (MS). The relationships between the concentrations of 25(OH)D3 and the indices of calcium-phosphate metabolism were determined, depending on the duration of disease and vitamin and unsaturated fatty acids supplementation. Material and methodsThirty patients (15 at the early stage and 15 at the advanced stage of MS) were enrolled. Each patient underwent neurological examination; neurological motor disability was defined according to the Expanded Disability Status Scale (EDSS). The results were compared to the values obtained in the control group (15 individuals) selected according to the age of subjects, their residence, ethnicity and gender. ResultsSignificantly lower serum concentrations of 25(OH)D3 in MS patients compared to the control group were found. MS patients at the advanced stage of the disease (duration of 5–6 years) had lower 25(OH)D3 concentrations than patients at the early stage of MS. Among patients in an advanced stage of MS, significantly lower levels of 25(OH)D3 were found in women compared to men with a similar level of physical disability. ConclusionsLower serum concentrations of 25(OH)D3 in MS patients compared to the control group were found. The lowest concentrations of 25(OH)D3 were found in female patients aged 20–40 and in patients with a longer disease duration without substantial impairment of calcium-phosphate metabolism.

Theory of mind and empathy in patients at an early stage of relapsing remitting multiple sclerosis

IntroductionEarly after having been diagnosed with relapsing remitting multiple sclerosis (RRMS), young patients coping with the new situation require good social support and interactions. Successful social interaction is critically dependent upon the ability to understand the minds of others and their feelings. Social cognition refers to the ability to understand the mind of others. Theory of mind (ToM) defines the capability to reason about mental states of others. Empathy describes the ability to have insight into emotional stages and feelings of others. Despite the knowledge of cognitive impairment, which can have profound effects on patients daily activities and quality of life in advanced stages of multiple sclerosis, little is known concerning social cognition in early stages of RRMS. MethodsIn this analysis, tests assessing executive functions (working memory, set shifting and inhibition) and instruments measuring theory of mind (the Movie for the Assessment of Social Cognition – MASC) and empathy (Baron-Cohen's Empathy Quotient) were administered to 25 young adult patients at an early stage of RRMS and to 25 healthy controls (HC). Patients and HC were carefully matched according to intellectual level, age, gender, handedness and education. An early stage of the disease was defined as being diagnosed with RRMS in the last 2 years and having an EDSS of 2 or lower. ResultsPatients had significantly more incorrect responses (“missing”) ToM (P<0.04). Moreover, patients showed a significantly lower level of empathy in the self-rating questionnaire (P<0.02). Of the cognitive tests and depression, ToM and Empathy Quotient (EQ) scores were only significantly correlated with the interference score of the stroop test. ConclusionsOur findings suggest that theory of mind and empathy are deficient even at early stages of RRMS. Deficits in theory of mind and empathy might negatively influence interpersonal relationships in patients with RRMS.

Encountering the downward phase: biographical work in people with multiple sclerosis living at home

This qualitative study examines how individuals in an advanced stage of multiple sclerosis (MS) who live at home, accommodate to their illness. The downward phase in the illness trajectory of MS often consists of a lengthy period of gradual decline. According to Corbin and Strauss's framework, accommodation is conceptualized as biographical work that refers to the actions taken to retain control over the life course and to give life meaning again. For our purpose semi-structured interviews with 22 people with MS were conducted and compared with 21 interviews with their family caregivers. The analysis consisted of fragmenting and connecting the data and involved close reading and constant comparison. The continuity of biography is at risk since body and performance failures lead to the loss of salient aspects of self. Participants interpret MS as an all-encompassing illness and emphasize the process of having to give up everything. Four case stories are described to demonstrate the complex intertwining of the biographical processes and to show the range in biographical accommodation. Some patients are capable of putting their lives back together again, while others retreat or do not consider MS a part of their lives. The unpredictable course of MS makes it impossible to give new direction to the life course.